Connecting the NF Community
The Children's Tumor Foundation's 4th annual patient and family conference, the NF Summit 2025 will take place at the Omni Shoreham in Washington, DC from Thursday, June 19 to Saturday, June 21, 2025.
Who Should Attend?
The NF Summit brings together NF patients and families, volunteers, event organizers, researchers, clinicians, patient advocates, friends, and supporters connected to NF.
Your registration fee includes:
- Access to all NF Summit sessions
- Morning and midday meals during session days
- Thursday Welcome Dinner Reception
- NF Summit Reception at the National Zoo
Agenda Highlights
In response to the overwhelming desire from past NF Summit attendees, the 2025 agenda will provide not only topics presented by leaders in the NF research and clinical field but also networking opportunities, interactive workshop sessions, and opportunities for you, the NF community, to share your ideas and your NF story. All sessions will be recorded for later viewing and will have live captioning. Simultaneous Spanish interpretation will also be available.
Check back regularly for exciting updates about the agenda.
2025 NF Summit Co-Chairs
Our 2025 NF Summit Medical Co-Chairs are Miriam Bornhorst, MD, and Carlos Romo, MD. Dr. Bornhorst recently joined the Comprehensive NF Clinic at Lurie Children’s Hospital after many years with Children’s National and brings decades of experience to our planning efforts. Dr. Romo is part of one of the largest comprehensive NF clinics in the country at Johns Hopkins University and has spoken at countless NF patient gatherings.
Our committee also consists of three patient representatives: Christine Panza, Jason Gonzales, and Eunice Lee. We are excited to bring these dedicated clinicians & patient representatives to Washington, D.C., to create another unforgettable NF Summit.
Travel and Location Information
Upon the successful completion of your NF Summit registration you will receive a link to to book your lodging at our host venue with a discounted rate; our block will expire on May 27, 2025 or when all rooms have sold out, whichever comes first.
To learn more about the Omni Shoreham Hotel, which is located less than one mile from the National Zoo, please click here.
Sponsorship Opportunities
Sponsors, interested in partnering with us? Click here.
If you are interested in Sponsoring this event or would like to become an Exhibitor, please contact Barbara Gallagher at bgallagher@ctf.org.
For non-profit academic institutions wishing to exhibit at the NF Summit, please contact Kate Kelts at kkelts@ctf.org
Connecting the NF Community
The Children's Tumor Foundation's 4th annual patient and family conference, the NF Summit 2025 will take place at the Omni Shoreham in Washington, DC from Thursday, June 19 to Saturday, June 21, 2025.
This event brings together NF patients and families, volunteers, event organizers, researchers, clinicians, patient advocates, friends, and supporters. all who have a connection to neurofibromatosis.
Your registration fee includes:
• Access to all NF Summit Sessions
• Morning and Midday meals during session days
• Thursday Welcome Dinner Reception
In response to the overwhelming desire from past NF Summit attendees, the 2025 agenda will provide not only topics presented by leaders in the NF research and clinical field but also networking opportunities, interactive workshop sessions, and opportunities for you, the NF community, to share your ideas and your NF story.
All sessions will have live captioning. Simultaneous Spanish interpretation will also be available.
Questions? Contact us at nfsummit@ctf.org.
See you in Washington, DC!
If you are interested in Sponsoring this event or would like to become an Exhibitor, please contact Barbara Gallagher at bgallagher@ctf.org.
Agenda
Day - 01
12:00
VLC & Speaker Check-In
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Check-in opens for members of the Volunteer Leadership Council and NF Summit speakers outside the Hampton Ballroom.
14:00
General Check-In
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Check-in opens for all NF Summit attendees outside the Hampton Ballroom.
15:00
VLC Roundtable
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Open to CTF Volunteer Leadership Council Members and current and future fundraisers: The Volunteer Leadership Council (VLC) will host an in-person Round Table meeting for all members to get updates on foundation-wide initiatives and network with other CTF volunteers.
15:00
REINS Meeting
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The Response Evaluation in Neurofibromatosis and Schwannomatosis collaborative will host their annual summer meeting. Open to current and potential members of REINS.
18:00
2025 NF Summit Welcome Reception
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Join us for a fun and relaxed evening as we kick off the NF Summit with our Welcome Reception — a special gathering for families affected by Neurofibromatosis (NF). This is your chance to meet fellow attendees, connect with others who understand the journey, and start the weekend in a spirit of community and support. Be sure to visit our event sponsors and exhibitors as well!
Enjoy light refreshments, casual conversation, and a warm atmosphere designed to help everyone feel at home. Whether you’re reconnecting with old friends or meeting new ones for the first time, we can’t wait to welcome you.
Day - 02
06:50
Shine A Light Walk Morning Event
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Throw on your Shine a Light Walk Gear, meet in the lobby of the Omni Shoreham at 6:50 am, and walk with the Walk Team!
07:00
General Check-In
08:00
Breakfast
08:45
Keynote Panel: Stay Active, Stay Vocal, Stay United - How the NF Community Drives Progress Together
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Join us as we kick off the NF Summit with a dynamic, real-talk conversation about how people like you are moving the needle for neurofibromatosis and schwannomatosis - not just in the halls of Congress, but across every part of our community.
We’ll begin with insights from our advocacy partners in DC about the current funding landscape and what’s at stake. Then we’ll turn to NF community leaders, funders, and families who are turning frustration into fuel - showing how advocacy takes shape year-round, in everyday actions that drive real impact.
You’ll leave this session informed and energized with fresh ideas, tangible ways to get involved, and a renewed sense of what’s possible when we speak with one voice.
Annette Bakker, PhD
CEO, Children's Tumor Foundation
Annette Bakker, PhD
CEO, Children's Tumor Foundation
Annette Bakker, a Ph.D. in Biochemistry, was an academic researcher for ten years - University Antwerp, Yale Medical School, and the Myology Institute Paris. Following this, she accumulated 15 years of experience in multiple executive leadership positions in Oncology R&D in big pharma and biotech. She holds over 50 publications and 5 patents (https://orcid.org/0000-0001-8420-7831).
Motivated by the realization that numerous groundbreaking discoveries fail to translate into clinical benefit, she joined the Children’s Tumor Foundation (CTF) in 2011 to deploy CTF's talent, time, and treasure (TTT) to help bridge the gaps between scientific discoveries and clinical benefits, particularly focusing on neurofibromatosis, a rare genetic disorder. In 2022, she was decorated Officer in the Order of Leopold by the king of Belgium for her bold approach and dedication to improving patients' lives.
Annette strongly believes that patient-centric research foundations hold a unique position in the R&D ecosystem. Organizations, such as CTF, are trusted partners for all stakeholders, with the same sense of urgency as the patients. As a FasterCures Changemaker and Chan Zuckerberg Initiative mentor, Annette is deeply committed to constructing an enterprise that not only benefits patients with NF but serves as a model for expediting drug discovery and development within the broader rare disease community.
Elizabeth O'Brien
Co-Founder/CEO, CureNFwithJack
Elizabeth O'Brien
Co-Founder/CEO, CureNFwithJack
Aubrey Rothrock
Partner, Squire Patton Boggs
Aubrey Rothrock
Partner, Squire Patton Boggs
Katie Vanlandingham
Associate VP, Van Scoyoc Associates
Katie Vanlandingham
Associate VP, Van Scoyoc Associates
Simon Vukelj
Chief Marketing Officer, Children's Tumor Foundation
Simon Vukelj
Chief Marketing Officer, Children's Tumor Foundation
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Kate Doerge
Co-Founder/CEO, Penny's Flight Foundation
Kate Doerge
Co-Founder/CEO, Penny's Flight Foundation
"It’s not your lifespan that matters, it’s your wingspan.” Kate Doerge is a motivational speaker, author, non-profit founder, and brand strategist. Her mission is to inspire others to live with joy, connect powerfully, and lead with purpose. Kate is the Co-Founder of the nonprofit Penny’s Flight Foundation. She is the author of a new book on navigating grief and life’s challenges with love, connection and positivity that will be published June 3rd, 2026. Her TEDx talk: “How to Find Your Purpose” will be released Summer 2025. A motivational speaker, Kate gives talks at corporations, schools, and conferences on a range of topics including conquering challenges, finding your purpose, new approaches to grief and loss, career changes, midlife changes and mental health. Talks include Post Traumatic Growth, 5 Actions Through Grief, How to Shine Your Light, Creating a Purpose-Driven Brand and more. A non-profit founder, and transformational board member, Kate is leader for purpose-led initiatives. With her husband Chad Doerge, Kate launched Penny’s Flight Foundation in honor of her daughter Penny who passed away from Neurofibromatosis complications in 2022. The Foundation is dedicated to finding a cure and funding research for Neurofibromatosis. There are over 100 Penny’s Flight chapters at high schools and colleges across the country dedicated to inspiring young people to make an impact at any age. A strategist for top brands and Operating Partner at Traub, Kate is known for her expertise on communication strategy, partnerships, rebrands, transformation, and mission-inspired initiatives. Current and former clients include L’Oréal, H&M, Kate Spade, Value Retail- The Bicester Collection, Tag Heuer, and Oscar de la Renta. Kate is the Co-Chair of the Board of Advisors for the Hospital for Special Surgery. She is a member of the Board of Trustees and the HSS Pediatric Council. For almost two decades, Kate has Co-Chaired HSS’ largest and most successful fundraiser for the Pediatric Pavilion, raising more than $27 million. Kate is a Board Member and strategic advisor for the Penny Doerge Adaptive Academy (PDAA) at the Hospital for Special Surgery. The Academy organizes adaptive programs for kids and teens facing a range of disabilities.
John Manth
President, NF Network
John Manth
President, NF Network
John Manth is the father of Leah Manth who was diagnosed with NF2 in 2007 when she was just 7 years old. John and his family are dedicated to finding meaningful treatments and a cure for NF2. John is the current President of the Board of Directors for the NF Network, as well as Chairman of the Board of Directors for NF Northeast. John Formally has served on the board of directors for NF2 BioSolutions as well as Advocure NF2. Since Leah’s diagnosis the Manth Family and Friends have raised $1,000,000 and sponsored 13 NF2 research studies. John is a staunch advocate for federal funding for NF research and assists in coordinating, training and mentoring NF families attending the NF Network’s annual trip to Washington DC. He has extensive experience in fund raising, non-profit organizational leadership, advocacy, and NF outreach. John, his wife Linda and Dr. Scott Plotkin co-wrote a booklet entitled “Understanding NF2” published by NF Network. He has also written articles on various NF topics. Additionally, he has presented at NF Symposiums and has facilitated many NF family and patient discussions. John teaches undergraduate courses in Violence, Global Crime, and Comparative Criminal Justice at Hilbert College in Hamburg, NY as well as a Criminal Justice Career Program to high school students. He holds a Bachelor of Arts degree in Criminology from University of Maryland and a Master of Arts degree in Criminal Justice and Education from Buffalo State College.
09:00
Mindfulness & Movement
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Start your day in the teen community with an accessible movement and mindfulness practice! This session combines gentle movement with breathing techniques and psychoeducation designed to build mind-body connection, reduce stress, and connect with peers. You will learn simple practices that can be continued at home to support both physical and mental well-being. Led by Nina Lester, a licensed mental health counselor and somatic psychotherapist specializing in body-centered approaches to psychological well-being and healthy relationships with self and others. All ability levels are welcome. Movement is for every body!
Nina Lester, LMHC, RDMT, PMH-C
Licensed Mental Health Counselor
Nina Lester, LMHC, RDMT, PMH-C
Licensed Mental Health Counselor
Nina Lester is a licensed mental health counselor and a somatically trained psychotherapist (Naropa University, Boulder CO). She primarily works as a clinical supervisor and mental health counselor for the Massachusetts Early Intervention system, supporting children with developmental delays and disabilities, their families, and the clinicians who work with them. Her clinical interests include maternal mental health, early childhood disability populations, and supporting health professionals working in complex care settings. Her approach to wellness utilizes the inherent wisdom of the body to support well-being and connectedness to self and others. She is additionally certified as a dance and movement therapist and has facilitated workshops and classes in mindful movement techniques (e.g., yoga, dance) in various therapeutic and educational settings.
10:00
Jenga with the CTF Junior Board
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Get ready for a fun and exciting team Jenga tournament hosted by the Junior Board. You and your teammates will strategize, stack, and compete to see who can keep the tower standing the longest. It’ll be a great way to bond, challenge yourself, and share plenty of laughs along the way!
10:15
Coffee/Tea Break
10:30
NF Moms Talk: What I Wish I Knew Then
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Listen in as three moms get together to talk about all the lessons they’ve learned over the years, and the things they wish they’d known back then. Learn about everything from family dynamics and self-care to getting the most out of Summit. All are invited to attend!
10:30
Inside Out: How Advanced Imaging is Changing Neurofibromatosis Management
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This session will start off with a summary of the most recent European guidelines on imaging for patients with neurofibromatosis with a focus on optic pathway gliomas, whole body MRI imaging for plexiform neurofibromas, and screening for malignancies. This will be followed by panel discussion with physicians and patients about different topics related to imaging in NF based on feedback from the NF community. Audience participation and questions are encouraged during the panel discussion.
Miriam Bornhorst, MD
Miriam Bornhorst, MD
Heather Sheeley-Johns
NF2 patient
Heather Sheeley-Johns
NF2 patient
An NF2 Scwannomatosis patient doing the best I can to navigate life and NF!
Amedeo Azizi, MD
Medical University of Vienna
Amedeo Azizi, MD
Medical University of Vienna
Assoc. Prof. Dr. Amedeo A. Azizi is head of the Neurofibromatosis expertise centre at the Department of Paediatrics and Adolescent Medicine, Medical University of Vienna (MUV), Austria. After graduation at the University of Vienna in 2003 A. Azizi started his training as paediatrician at the General hospital in Vienna where he also completed his specialisation as paediatric neuro-oncologist and works as attending physician. He became head of the Neurofibromatosis program in 2017 and was appointed as associate professor in 2018. The same year the NF centre was nominated and approved as associated centre to the European Reference Network for Genetic Tumour Risk Syndromes (ERN GENTURIS). A. Azizi is part of the clinical care advisory board (CCAB) of CTF Europe since 2020.
A. Azizi’s area of expertise and main research areas include paediatric low grade (LGG) and high grade glioma (HGG). He is member of the SIOPE LGG working group and the Austrian lead of the SIOP Europe low grade glioma study. A main focus lies on the high-risk group of infants with hypothalamic glioma. He is involved in multiple clinical trials, partly as principal investigator or member of steering committees.
In the Neurofibromatosis clinic Azizi follows paediatric patients with NF1, NF2 and Schwannomatosis with and without malignancies. In Neurofibromatosis type 1 (NF1) associated conditions A. Azizi has focussed on NF1 associated optic pathway glioma with special interest in identifying factors associated with visual outcome. Furthermore, he studies the potential of functional imaging methods such as FDG-PET in the early detection of NF1 associated malignant peripheral nerve sheath tumours in asymptomatic patients in order to identify premalignant and undiagnosed lesions.
Shivani Ahlawat, MD
Johns Hopkins University
Shivani Ahlawat, MD
Johns Hopkins University
Dr. Shivani Ahlawat is an Associate Professor at the Russell H. Morgan Department of Radiology and Radiological Science in Johns Hopkins School of Medicine and also serves as the musculoskeletal imaging fellowship director. Dr. Ahlawat’s clinical and research activities focus on advanced magnetic resonance imaging (MRI) techniques, specifically the detection and characterization of peripheral nerve injury and soft tissue tumors including peripheral nerve tumors, particularly in the setting of peripheral nerve tumor syndromes. Her areas of interest include whole body MRI in the setting of Neurofibromatosis type 1 (NF1) and schwannomatosis with emphasis on quantitative, non-contrast MRI techniques such as diffusion weighted imaging and apparent diffusion coefficient mapping in characterization of bone and soft tissue tumors.
11:00
Ask Anything - No Parents Allowed
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Join fellow teens to ask an NF expert all your NF questions. From how NF affects your health, to relationships, to thinking about the future, all questions are welcome!
Kara Anstett, MS, CGC
NYU Langone Health
Kara Anstett, MS, CGC
NYU Langone Health
Genetic Counselor for the NYU Comprehensive Neurofibromatosis Center since 2015, caring for adults and children with neurofibromatosis and schwannomatosis.
11:30
Peripheral Nerve Sheath Tumors: Surgical Considerations
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When is surgery necessary? Should you get a biopsy? Does your surgeon’s experience affect outcomes? This talk will answer these key questions, including when to seek a second opinion and how different surgical approaches—biopsy, partial resection, and margin strategies—are chosen.
We’ll also discuss what to expect during recovery, including pain management and rehab needs. Whether you're newly diagnosed or considering surgery, this session will help you make informed decisions about your care.
Allan Belzberg MD
Johns Hopkins School of Medicine
Allan Belzberg MD
Johns Hopkins School of Medicine
Dr. Belzberg is professor of Neurosurgery and Plastic & Reconstructive Surgery at the Johns Hopkins School of Medicine. He holds the George J Heuer Chair in Neurosurgery and has a clinical focus in spine and peripheral nerve surgery. He is Director of Peripheral Nerve Surgery at Johns Hopkins Hospital, All Children’s Hospital, and the Kennedy Krieger Institute. He graduated from the University of British Columbia, attended Medical School and residency at the University of Calgary, interned at McGill University and completed Fellowship training at Johns Hopkins.
As a member of the multi-disciplinary comprehensive Neurofibromatosis Clinic at Johns Hopkins he treats patients suffering from a variety of benign and malignant tumors. His expertise in both spinal and peripheral nerve surgery allow him to remove the most challenging nerve tumors and reconstruct both the spine and peripheral nerves as required.
Dr. Belzberg is interested in neuropathic pain and is the co-director of the Neurosurgery Pain Research Institute at Johns Hopkins. He has a publication record concerning the pathophysiology of painful nerves including those related to NF and nerve injury. His laboratory described a novel animal model of neuropathic pain that allows the investigator to study both stimulus evoked mechanical hyperalgesia and pain phenotype change of axons exposed to degenerating axons (neuroma). Dr. Belzberg is involved in basic science research concerning gene regulation in Schwannomatosis. His research efforts also include understanding aspects of neural regeneration.
Dr. Belzberg has previously served as the President of the American Society for Peripheral Nerve. He has served as a scientific advisor to a broad spectrum of health care entities including AstraZeneca, Neurofibromatosis Inc., Spinal Kinetics and Medtronic. He has lectured in more than 30 countries, published over 150 peer reviewed papers and his contributions to clinical medicine have changed the practice.
11:30
Developmental, Cognitive, and Social-Emotional Challenges in NF1 from Childhood to Young Adulthood
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In this session, we will discuss common developmental, cognitive, and social-emotional challenges from toddlerhood through young adulthood. We will also discuss how professionals can help families be proactive in addressing these difficulties.
Karin Walsh, PsyD
Children's National Hospital, The George Washington University School of Medicine
Karin Walsh, PsyD
Children's National Hospital, The George Washington University School of Medicine
Karin S. Walsh, Psy.D. holds a doctoral degree in Clinical Psychology and received advanced post-doctoral training in pediatric neuropsychology. She is a pediatric neuropsychologist in the Division of Neuropsychology at Children’s National Hospital and Professor of Pediatrics and Psychiatry & Behavioral Medicine at the George Washington University School of Medicine and Health Services in Washington DC, USA. She has 18 years’ experience as a clinical neuropsychologist and scientist caring for and studying children with genetic disorders such as neurofibromatosis type 1 and other RASopathies, pediatric brain tumors, and blood disorders including leukemia and hemophilia. Dr. Walsh is an active clinical researcher who has received multiple grants for her research. She conducts research and publishes in the areas of cognitive outcomes in pediatric cancers, and hematologic disorders, and congenital disorders, with particular focus on executive functions and the interconnections of the cerebellum and cortex and associated contributions of the cerebellum to higher cognitive functions. She is also involved in intervention research, specifically targeting learning and executive function difficulties in pediatric clinical populations. Her expertise has resulted in her serving as a consultant or reviewer to various private and federal organizations including the Department of Defense, and pharmaceutical companies. Dr. Walsh holds several leadership positions in international committees and groups. She is past president of the Posterior Fossa Society, current chair of the Neurocognitive Committee within the NF Clinical Trials Consortium, and previous chair of the neurocognitive committee for the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) working group. She is also a member of multiple working groups and scientific committees focused on developing and carrying out high level research that will ultimately benefit children and families affected by acquired and congenital disorders. Finally, Dr. Walsh is an active participant in the education and mentorship of pre- and post-doctoral students and junior faculty in psychology, neuropsychology, and medicine.
12:30
Lunch
13:30
From Rare to Remarkable: Join the Research Journey
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Join Kate Kelts, CTF's NF Nurse, to learn about clinical research and how you can get involved now or in the future.
13:30
Funding the Future: Your Role in Advancing NF Research Now
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In a time of critical funding cuts, your support is more vital than ever. With government funding for research becoming increasingly limited, donor support now plays a crucial role in advancing every NF breakthrough and improving patient outcomes. This session will spotlight the urgent need for continued philanthropy, showcasing recent breakthroughs made possible by donor support and the real-world impact of every gift. We’ll share inspiring success stories, unpack how the CTF grant process directs resources strategically, and show how—especially now—your contributions have the power to transform lives. Join us to see how your generosity can bridge the gap and keep progress moving forward.
Irene Morganstern, PhD
Children's Tumor Foundation
Irene Morganstern, PhD
Children's Tumor Foundation
Phioanh Leia Nghiemphu, MD
UCLA
Phioanh Leia Nghiemphu, MD
UCLA
Dr. Nghiemphu is a Neuro-Oncologist with training in Neurology and is the Director of Neuro-Oncology Clinical Service and the Director of the Neuro-Oncology Fellowship Program. She is also the Clinical Director of the UCLA Neurofibromatosis and Schwannomatosis Program. She has a special interest in the treatment of patients with primary brain & nervous system tumors using individualized molecular targeted therapies.
Stephanie Reeve
Nurse/Caregiver
Stephanie Reeve
Nurse/Caregiver
Stephanie holds a Master’s degree in Nursing and works in clinical development at a leading pharmaceutical company. With a strong background in patient care and a deep commitment to medical research, Stephanie brings both professional expertise and personal passion to the field. As a parent to a daughter with neurofibromatosis type 1, Stephanie has experienced the healthcare system not only as a clinician but also a caregiver. This dual perspective has fostered a profound dedication to patient advocacy. Whether in the workplace or at home, Stephanie is driven by a mission to ensure that every patient’s voice is heard and their needs are met with compassion and integrity.
Marco Giovannini, MD, PhD
UCLA
Marco Giovannini, MD, PhD
UCLA
Marco Giovannini, M.D.; Ph.D. is Professor-in-Residence of Head and Neck Surgery at the David Geffen School of Medicine of the University of California Los Angeles (UCLA) and Scientific Director of the UCLA Comprehensive Neurofibromatosis and Schwannomatosis Program. A native of Italy, Dr. Giovannini earned his M.D.;Ph.D. at the University of Bologna. He conducted research in France at the Institut National Recherche Sante Medicale (INSERM) for many years, as the Head of the “Functional Genomic of Solid Tumors” Unit, in Paris. A molecular geneticist by training, Marco Giovannini is a physician-scientist who conducts laboratory and clinical research in the field of neurofibromatosis and schwannomatosis. His laboratory, which has been continuosly funded by the DoD for over 20 years, develops genetically engineered models to dissect molecular mechanisms of tumorigenesis and to test new therapeutic options and studies mechanism of action of treatments in NF/SWN patients. Dr. Giovannini received the 2021 Von Recklinghausen Award of the CTF and the 2022 Theodor Schwann Award of the European NF Group.
Kim Snipes
CTF, Board of Directors
Kim Snipes
CTF, Board of Directors
Kim is a seasoned financial services and insurance executive with over 25 years of CIO, technology & operations leadership spanning a broad range of technology disciplines and lines of business. Leveraging her unique blend of expertise in business, technology, and operations, she is known for successfully utilizing modern technology strategies, digital experiences and automation to drive business transformation. Her client-centric leadership vision has led to differentiated end-to-end client experience. Kim excels at driving enterprise performance and change in highly regulated industries and fosters a proactive risk management culture. Her collaborative leadership style and ability to build relationships across all functions promotes high-performing, empowered teams that deliver sustainable value and innovation. Kim’s expertise in leveraging technology to streamline and transform processes while providing risk oversight, coupled with her extensive network of partners, makes her an asset to any organization’s board.
Currently, Kim serves as the commercial technology and operations EVP at Key Bank responsible for architecting the transformation of commercial client experiences for business banking, middle market, and institutional clients. The commercial business is a full-service corporate bank focused on serving the needs of clients in seven industry sectors: consumer, energy, healthcare, industrial, public sector, real estate, and technology. In her role, Kim is also responsible for driving the commercial AI strategy to transform both the employee and client experience. Within twelve months of building a newly formed operating unit, Kim’s transformation agenda achieved a 33% improvement in operating efficiency, increased revenue to the bank and delivered a markedly higher client satisfaction.
In addition to her commercial experience, Kim served as Key Bank’s CIO and operations leader from 2019 to 2023 for the consumer bank where she owned the technology portfolio supporting the consumer bank and digital portfolio as well as the operations for the wealth, investment services and treasury services. While in this role, she successfully delivered on multiple technology modernization and transformation efforts in the areas of mortgage lending, non-real estate lending, collections, core banking and architected and launched a digital-only affinity bank for doctors in less than six months.
Prior to Key Bank, Kim served in CIO roles for leading financial institutions including USAA, Capital One, and Bank of America where she has led organizations of over 7000 teammates and managed billion-dollar financial plans. In her executive roles, Kim regularly presents to the Board of Directors as well as banking regulators to communicate a vision, roadmap and outcomes for strategies aligned with the overall organization priorities.
Kim serves on the board of Children’s Tumor Foundation and the campaign committee focused on developing a new venture philanthropy fund to partner with bio-techs and pharmaceuticals to accelerate the discovery and development of treatments for NF. She is also a passionate advocate of women in technology, having served in leadership roles on several internal advocacy groups as well as the executive board of Women Who Code, an organization focused on advancing women in technology through network support and learning opportunities.
13:30
Ophthalmic Care for Children with NF1 and NF2-Related Schwannomatosis
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The ophthalmic examination is important for all children suspected or diagnosed as having either NF1 or NF2. While the ophthalmic manifestations of NF1 and NF2 are significantly different, routine examinations with an ophthalmologist or neuro-ophthalmologist are recommended. This symposium will discuss the eye findings used to diagnose NF1 and NF2, along with the frequency of ophthalmic examinations and current treatment options for visually threatening manifestations of these conditions.
Robert Avery, D.O., MSCE
Robert Avery, D.O., MSCE
14:30
The Impact of a Collective Approach
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Join members of the NF Collective, a collaboration of multiple NF advocacy organizations, to learn about the impact of working together to improve the lives of everyone living with NF.
Andrea Malta
N/A
Andrea Malta
N/A
My name is Andrea Malta, i am a 24 year-old native of Los Angeles, California, and a first-generation Mexican-American. Fluent in Spanish And English. I’m the youngest child and the only one in my family with NF
At the age of four months, I was diagnosed with neurofibromatosis type one Further medical examinations, including an MRI, revealed a brain tumor affecting a significant portion of my brain. At 18 months, i had my first surgery. It was a full cranial, where they opened my head for one side to another. Enduring a series of more than 15 surgeries, including seven extensive cranial procedures, has presented ongoing challenges. I grapple with mobility issues, legal blindness in my left eye, and difficulties in comprehension due to my learning disabilities, compounded by an ADHD diagnosis.
Stacey DeCillis
Stacey DeCillis
Tracy Wirtanen
Littlest Tumor Foundation
Tracy Wirtanen
Littlest Tumor Foundation
“We invest in the NF community with impactful programming. We lead NF Family Wellness Retreats (free for NF families), the NF Young Adult Leadership Program, and spearhead the NF Collective. We see children soar, moms connect, and young adults find their voices. It is amazing and an honor to be part of it all.”
Murray McCarten
NF Collective & NF Team FoundationT
Murray McCarten
NF Collective & NF Team FoundationT
Murray has served as the Executive Director of the NF Team since December 2021. Prior to that, he served as a board member of the NF Team from 2014 to present. Murray has also served as the NF Team representative with the NF Collective since 2020. Prior to his work with the NF Team, Murray served as a volunteer fundraiser with the Children’s Tumor Foundation from 2008-2011. By day, Murray serves students with disabilities as a special education teacher, and has a direct connection to Neurofibromatosis through his family.
14:30
Connecting in New Ways: How Multimodal Options, Technology, and AI Empower Communication in Neurofibromatosis
Heather Thompson, PhD CCC-SLP, S-LP(C)
California State University, Sacramento
Heather Thompson, PhD CCC-SLP, S-LP(C)
California State University, Sacramento
Heather L. Thompson, PhD., CCC-SLP (she/her) is a licensed Speech-Language Pathologist (SLP), Professor, and Department Chair of the Department of Communication Sciences and Disorders at California State University, Sacramento. She is SLP Discipline Director for the Northern California Leadership Education in Neurodevelopmental Disabilities (NorCal LEND) program, which is housed at the University of California, Davis MIND Institute. She also holds a Language, Speech and Hearing Services Credential and provides services as a speech-language pathologist at Sacramento City Unified School District and Shriners Children’s Hospital Northern California.
She has an interest in interdisciplinary clinical training for practitioners serving individuals with neurodevelopmental concerns. Her research interests include clinical trials and patient reported outcome measures. She has a specific interest in speech-language development of children with neurodevelopmental concerns including neurofibromatosis and the other rasopathies and evaluating assessments and interventions for and with individuals from these populations.
14:30
Teens Get Involved: Fundraising & Future Opportunities
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Join the CTF Junior Board to hear about how you can take charge of your own NF journey by getting involved in self-advocacy and other areas of CTF as you get older.
Leanna Scaglione
2025 CTF Ambassador
Leanna Scaglione
2025 CTF Ambassador
Leanna Scaglione is 33 years old living with NF2-Related Schwannomatosis (NF2-SWN). Ever since being diagnosed at 16 years old, she has refused to live defined by her diagnosis.
From relearning to walk, completing three chemotherapy drug trials, and going through numerous surgeries she has defied the odds against her.
Most recently she has gone undergone surgery to remove her right vestibular schwannomma leaving her completely deaf in her right ear.
She continues to live her best life as an endurance runner and hopes to be the first person with NF2-SWN to complete the Abbott World Marathon Majors. She shares her story and experiences living with NF2-SWN in hopes to spread awareness, motivate her community and rally for a cure
15:00
Coffee/Tea Break
15:30
Keys to Wellness: From Pain to Sleep
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This educational symposium will explore evidence-based strategies for managing chronic pain through lifestyle behaviors, therapies, and treatments. We will also discuss the foundations of sleep health and share practical approaches to support and promote healthy sleep.
Salman Hirani, MD
Salman Hirani, MD
Sanna Lokhandwala, PhD
Boston Children's Hospital/Harvard Medical School
Sanna Lokhandwala, PhD
Boston Children's Hospital/Harvard Medical School
Sanna is a T32 Postdoctoral Fellow at the Neuroscience of Risk and Development Lab at Boston Children’s Hospital, Harvard Medical School. She obtained her PhD in Psychological & Brain Sciences (Developmental Science) from the University of Massachusetts Amherst in 2023 where her research focused on sleep and cognitive development in early childhood. As a Fellow, Sanna’s work focuses on how aspects of sleep and the brain relate to psychopathology risk in adolescence.
15:30
How to Tell a Child about an NF1 Diagnosis
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Have you struggled with how to talk to your child about their NF1 diagnosis? Or how to answer their questions about NF1? This presentation describes research of parents' experience when they have, or have not, chosen to tell their child about a diagnosis of NF1. The information from this research was used to develop two new resources for families: Super Emerson- an activity book about NF1 for kids and Talking to Your Child about NF1- a companion guide for parents.
Ashley Cannon, MS, CGC, PhD
InformedDNA
Ashley Cannon, MS, CGC, PhD
InformedDNA
Ashley Cannon, PhD, MS, CGC is a Clinical Program Manager at InformedDNA and the Research Project Coordinator for University of Alabama at Birmingham (UAB) Genetic Counseling Program. As a clinician scientist, Ashley worked as a genetic counselor in the Neurofibromatosis Clinic at UAB, coordinated NF1 clinical trials, performed research focused on cutaneous neurofibromas, and was awarded the Francis S. Collins Scholars Program in Neurofibromatosis Clinical and Translational Research.
15:30
Jeopardy with the CTF Junior Board
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Join us to reconnect with old friends and meet new ones while playing a fun game of Jeopardy with the CTF Junior Board. The friendly competition will spark great conversations and plenty of laughs, making for a memorable experience. It’s the perfect way to come together, strengthen our teen community, and have a great time!
16:30
NF2 Unfiltered: Facing Deafness, Balance, and More
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A raw and honest look at life with NF2—because the journey isn’t just about challenges, but about resilience. Join 2 NF2 warriors ( Christine Panza and McKinnon Galloway) as they share their personal stories of navigating deafness, balance difficulties, facial paralysis, and mental health. Discover real-life solutions, practical tips, and the strength that comes from turning obstacles into opportunities.
McKinnon Galloway
McKinnon Galloway LLC
McKinnon Galloway
McKinnon Galloway LLC
McKinnon is a deaf/facial paralysis NF2 advocate, brain surgery survivor, and content creator dedicated to raising awareness about deafness, facial paralysis, and balance challenges. Diagnosed at 16, she's turned adversity into advocacy, sharing real-life strategies for thriving with NF2. Through her platform, she promote accessibility, resilience, and inclusion for the Deaf and Hard of Hearing community. Passionate about empowering others, she brings honesty, humor, and practical tools to help others turn struggles into strength
Christine Panza
Children's Tumor Foundation
Christine Panza
Children's Tumor Foundation
Christine was diagnosed with NF2-SWN at the age of 9 and is now 25 years old. Her NF2 journey has set in motion a deep interest in how the brain is put together and in what treatments might develop both in drug and surgical therapies. She holds a B.S. in Behavioral Neuroscience from Northeastern University, and last month, graduated from Boston University with a Masters Degree in Anatomy and Neurobiology. She is planning to pursue a Ph.D. in the future. Additionally, she is the Director of the Patient Outreach Committee of the Children’s Tumor Foundation Junior Board.
16:30
NF1 and Plexiform Neurofibroma: Updates in Treatment and Clinical Trials
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This presentation will be a broad overview of NF1-PN, including a review of the natural history of PN and warning signs of malignancy, a discussion of current treatment options, and will also provide updates on new and upcoming clinical trials and research studies.
Chelsea Kotch MD, MSCE
Children's Hospital of Philadelphia
Chelsea Kotch MD, MSCE
Children's Hospital of Philadelphia
Dr. Chelsea Kotch is a Pediatric Neuro-Oncologist at the Children’s Hospital of Philadelphia and Assistant Professor of Pediatrics at the University of Pennsylvania who cares for children and young adults in the Neuro-Oncology and Neurofibromatosis Multi-Disciplinary Clinics. She is a clinical researcher and Francis S Collins Scholar in NF Translational and Clinical Research with a focus on improving outcomes for individuals with NF1-associated tumors through advanced epidemiologic research methods and early phase clinical trials.
17:30
Blue & Green Circle Donor Reception
18:30
NF Summit Reception at The National Zoo
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Join us for a night of wild fun at the National Zoo. NF Summit attendees will enjoy dinner & private access to the Birdhouse, Elephant exhibit, and the brand new Panda exhibit. Come to network, connect, and relax with your NF community!
Day - 03
06:50
NF Endurance Morning Run
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Don your NFE Gear, meet in the lobby of the Omni Shoreham at 6:50 am, and join us for a run with the NFE Team!
08:00
Breakfast
08:00
General Check-In
08:45
PCORI and Patient-Centered Research in NF
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We will open the session with a short presentation about PCORI and a PCORI funded study that focuses on the NF population and will also have opening remarks from an adult patient with NF and a parent of a child with NF. We will then transition to a fireside chat style discussion among the 4 of us (Carly – funder; Vanessa – Research Investigator; 1 Parent of a child with NF, 1 adult patient with NF – patient representatives) and rotate asking questions between our patient/parent representatives, our study principal investigator, and the funder. While exact topics are still TBD, we expect to cover ways that patients and families can get involved that go beyond being research study participants, how study teams/funders might be more effective engaging with/involving patients and families in the research they do in meaningful ways, and how patients/families have made research studies better with through their contributions to the work.
Vanessa Merker, PhD
Massachusetts General Hospital
Vanessa Merker, PhD
Massachusetts General Hospital
Vanessa Merker, PhD is a health services researcher at Massachusetts General Hospital (MGH) and an Assistant Professor of Neurology at Harvard Medical School. Dr. Merker serves as the Director of Research at the MGH Family Center for Neurofibromatosis and Schwannomatosis, where she conducts research to improve the accessibility, quality, and patient-centeredness of clinical trials and clinical care for all types of NF.
Carly Paterson
Patient-Centered Outcomes Research Institute
Carly Paterson
Patient-Centered Outcomes Research Institute
Carly Paterson is a Senior Advisor to the Chief of Comparative Clinical Effectiveness Research (CER) at the Patient-Centered Outcomes Research Institute. In this role, she supports PCORI’s longitudinal topic theme advancement and efforts to optimize funding strategies and refine pre-award activities to maximize the impact and yield of PCORI’s patient-centered CER portfolio.
Prior to her current role as a Senior Advisor, Paterson was an Associate Director and Program Officer with the PCORI Systems Comparative Clinical Effectiveness Research unit for several years, contributing as a leader and mentor within the CER division supporting key CER areas such as telehealth, advanced illness, and rare disease. Prior to PCORI, Paterson was a postdoctoral fellow with the National Cancer Institute Cancer Prevention Fellowship Program, where her work focused on symptom management and palliative care for those with advanced cancer.
Paterson earned her doctorate from the University of South Florida College of Nursing, a Master of Public Health degree from the Dartmouth Institute for Health Policy and Clinical Practice, and her Bachelor of Science in Nursing degree from SUNY University at Buffalo.
Kirsta Scherff-Norris,MS
Kirsta Scherff-Norris,MS
Andrés Lessing
Patient Representative
Andrés Lessing
Patient Representative
Andrés Lessing was diagnosed with Neurofibromatosis Type 1 (NF1) in Argentina at nine-months-old, long before the NF1 gene's discovery. Throughout his life, he has channeled his various NF related challenges into impactful community action and research advocacy, approaching his work con ganas – with heartfelt dedication. For years, he and his family have been active in the NF community. Driven by the need for research breakthroughs, Andrés has served as a Consumer Reviewer for the CDMRP's Neurofibromatosis Research Program (NFRP) and as a Patient Representative for the REiNS International Collaboration, contributing to multiple working groups. Inspired to elevate the patient perspective, he has authored and co-authored peer-reviewed articles and consistently lobbies Congress for federal NF research funding with the NF Advocacy Network.
Professionally, Andrés is a Technical Business and Compliance Senior Manager at Blue Cross Blue Shield of Massachusetts, holding an Economics degree from Brandeis University and an MBA from Boston College. His commitment extends locally as a Town Meeting Member and as Treasurer for NF Northeast. Andrés and his wife, Lindsay, are also proud, busy parents of teenage twins.
09:00
Mindfulness & Movement
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Start your day in the teen community with an accessible movement and mindfulness practice! This session combines gentle movement with breathing techniques and psychoeducation designed to build mind-body connection, reduce stress, and connect with peers. You will learn simple practices that can be continued at home to support both physical and mental well-being. Led by Nina Lester, a licensed mental health counselor and somatic psychotherapist specializing in body-centered approaches to psychological well-being and healthy relationships with self and others. All ability levels are welcome. Movement is for every body!
10:00
Omni Hotel Scavenger Hunt
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Meet in Calvert to race through the historical Omni Shoreham Hotel and find hidden clues and win prizes!
10:00
From Experience to Impact: Navigating NF Clinical Trials
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This session will be a panel discussion with people living with different forms of NF who are currently participating in a clinical trial. The panelists will share their thoughts on why participating in studies is important, how they were able to join trials, and talk about their experiences. You will also learn about the different forms of clinical studies and about tools to help you find them.
Carlos Romo, MD
Johns Hopkins University School of Medicine
Carlos Romo, MD
Johns Hopkins University School of Medicine
Dr. Romo is an Assistant Professor of Neurology, Oncology and Medicine at the Johns Hopkins University School of Medicine, an attending physician in the Johns Hopkins Comprehensive Neurofibromatosis Center, and the Director of Clinical Research of the Neurofibromatosis Therapeutic Acceleration Program. His research interests include early phase clinical trials for the treatment of neurofibromatosis and gliomas.
David Klauder
Patient
David Klauder
Patient
I have Schwannomatosis. It all started in 1996 when I was 26. I had sciatica in my right back/leg. I had an
MRI done that showed a tumor on my L5/S1. I then had a needle biopsy, which was not the best idea
since Schwannoma’s grow in the nerve sheath and it felt like I was hit with a 220 electric line on my
back, which came back as a Schwannoma from the pathology department. I then decided to have
surgery on the tumor (1997). My surgeon “shelled” out as much of the tumor he could without cutting
my nerve. Obviously, the tumor returned since he was not able to get the whole thing. We then tried
radiation treatments (1998) on the tumor which did nothing. Then I decided to have another surgery
(1999) which removed some more of the tumor. At this point I was done with surgery on that tumor.
Fast forward to 2000, I was playing basketball with my niece and the ball hit my right bicep and sent
radiating pain down my arm. I then met with a neurologist. After hearing about my surgeries and arm
pain he said “we are going to do MRIs of your brain, cervical, thoracic, and lumbar to see if you have
Neurofibromatosis. After getting the MRI’s, which showed several tumors, I found my own geneticist at
The University of Penn. I met Dr. Katherine Nathanson who diagnosed me with Schwannomatosis.
Around the same time, I received the Schwannomatosis diagnosis I saw a surgeon about the tumor in
my right bicep. I did not pull the trigger on removing it since he gave me a 50/50 chance of losing
function in my right arm.
Fast forward to 2003 when I met my ex-wife, Jen. After dating for a year then being engaged for a year,
we got married in 2005 and decided to move to Myrtle Beach to be close to her parents. Before we
moved to Myrtle Beach, I spoke with Dr. Nathanson about finding a geneticist down south. She
recommended I go to Greenwood Genetics in Charleston, SC. Shortly after arriving in Myrtle Beach, I
found a new geneticist at Greenwood Genetics, Dr. Lyons. I had my first appointment with him in 2007.
Jen came with me to the appointment. This was important for me because Jen was pregnant with our
son Chase, and I wanted to both know the chances of passing the Schwannomatosis on to Chase. We
both learned more about the genetics of both the Schwannomatosis and Gitelman's Syndrome, my
other genetic defect. At one point in the appointment Jen started to cry and left the examination room
to compose herself. I think the reality of the possibility of passing on either of my genetic defects to
Chase became more apparent to her. After the appointment with Dr. Lyons, we went home and did not
talk much more about either genetic defect.
I was still establishing myself in Myrtle Beach and got hired on as a police officer with Coastal Carolina
University. I was living my life and I put my Schwannomatosis a bit on the back burner. After doing some
research I found Dr. Plotkin at The Neurofibromatosis Clinic at Massachusetts General Hospital and
made an appointment to meet with him regarding my Schwannomatosis. After meeting with him he
advised me that I needed to get some updated MRI’s especially of my brain. When I returned to Myrtle
Beach, I had a brain MRI completed (2010). A small tumor was found on the MRI, but it was so small that
we would just keep checking on it periodically. Around this same time, my marriage was not working
out, and Jen and I got divorced.
After my divorce I did not follow my Schwannomatosis as closely as I should have been. In retrospect I
should have continued to get yearly brain MRIs, but I was “living my life.” I met my second wife, Tammy
in 2014. We got married in 2015. In the summer of 2016, I got promoted to Lieutenant at my police
department. As part of the promotion, I had to go to the midnight shift, which I was reluctant to do.
Midnight shift is extremely rough on a person's health, especially with two genetic defects like
Gitelman's Syndrome and Schwannomatosis. While working the midnight shift, I got bad headaches.
The pain would be that of a migraine. But it would be primarily in my left eye. At times it felt like
someone was stabbing me in my eye with an ice pick. I tried taking Tylenol, but the pain was too bad. I
decided to make a doctor's appointment at Doctors Care. I was an established patient at Doctors Care,
but it was not a primary doctor, which I needed for getting referrals. At this appointment, I met Dr.
Eaton. When I told Dr. Eaton about my headaches and eye pain, he told me I needed to get a brain MRI.
He knew from my medical history that it could be a tumor causing my symptoms. He told me he would
schedule an MRI but I needed to get a primary doctor so they could refer me to a neurologist after my
MRI results came back. He told me his wife was a primary care doctor in Conway Physicians Group. I
made an appointment with her and scheduled the MRI. After getting the MRI she referred me to a
neurologist so they could help with my eye pain and read the results from the MRI when they were
complete. I then went to see my neurologist, Dr. Sandoz, to go over the results from my MRI. I
remember him sitting me down in front of two monitors. One of the monitors had my MRI from 2010
that showed my tumor the size of a dot. The other monitor had my 2016 MRI which showed that the
tumor had significantly grown from 2010. Dr. Sandoz referred me to The Medical College of South
Carolina, MUSC. The first doctor I met was a Gamma Knife doctor Dr. Joseph Jenrette. He told me my
brain tumor was too close to my brainstem to do Gamma Knife. He then sent me across the street to
Neurosurgeon Dr. Alex Vandergrift. When I met with Dr. Vandergrift the first thing he said to me was “If
you don’t do anything it would be your undoing!” It was at that point that I knew I could die from this
brain tumor. He asked me if I had any children, and I told him I had my son Chase. Since it was close to
Christmas, he told me to go have Christmas with my son and come back on January 6, 2017, and he
would remove my tumor. I went home and had two incidents that helped me stay positive going into
my surgery. First, I received a call from my then wife Tammy’s brother Danny. Danny gave me a very
cool pep talk about the power of positivity. He talked about how research has been done that shows
that patients who go into surgery with a positive attitude recover better than patients who go into
surgery with a negative attitude. Our conversation was very uplifting and put me in a great mindset.
The other incident occurred at the MRI center while I was getting my final MRIs before the surgery. An
older gentleman heard me talking to the MRI Tech and when she walked away, he began a conversation
with me. He said he heard my story and wanted to pray with me. He asked me to hold my hand, and
we prayed. He prayed for God to guide the surgeon hands and to remove my tumor. At this point most
of my anxiety about the surgery left my body and I was ready for the surgery. The surgery was a success
and Dr. Vandergrift removed the whole tumor so none of the tumor would grow back. Dr. Vandergrift
saved my life that day with the help of God guiding his hands.
Since my brain surgery my journey with Schwannomatosis has shifted to more doctors’ checkups to
monitor my schwannomas. On April 26, 2024, I had surgery to remove the schwannoma in my right
humorous at Massachusetts General Hospital by Dr. Justin Brown. After 20+ years he removed the
whole tumor and did not damage my radial nerve. I still have full function in my right arm thanks to Dr.
Brown. I’ve gotten more involved with the CTF community in recent years and would like to get more
involved with CTF when I retire from my job as a police officer
Roxie Schoppet
Panel member
Roxie Schoppet
Panel member
Besides myself, all three of my children have NF1.
Stephanie Reeve
Nurse/Caregiver
Stephanie Reeve
Nurse/Caregiver
Stephanie holds a Master’s degree in Nursing and works in clinical development at a leading pharmaceutical company. With a strong background in patient care and a deep commitment to medical research, Stephanie brings both professional expertise and personal passion to the field. As a parent to a daughter with neurofibromatosis type 1, Stephanie has experienced the healthcare system not only as a clinician but also a caregiver. This dual perspective has fostered a profound dedication to patient advocacy. Whether in the workplace or at home, Stephanie is driven by a mission to ensure that every patient’s voice is heard and their needs are met with compassion and integrity.
10:45
Coffee/Tea Break
11:00
CTF Development Session
11:00
Independence, Empowerment, and Transitions: Navigating Adulthood with NF
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Join us for an engaging and uplifting panel discussion designed to inspire and empower young adults as they navigate their NF healthcare journey. This session will feature a group of NF patients and professionals who will share their personal stories and insights. Panelists will reflect on their own experiences and discuss key areas of transitioning into young adulthood, with themes including personal independence, overcoming obstacles, medical advocacy and communication, managing mental health, pursuing careers, and maintaining a mindset rooted in hope and partnership. Whether you’re a young adult with NF or supporting an NF hero, this session will offer space to connect and explore how your experiences can shape your strength, resilience, and path forward
Emily Little, RN, BSN
Emily Little, RN, BSN
Steven Sheard, MA, BCPA
Brainy Ridge, Inc
Steven Sheard, MA, BCPA
Brainy Ridge, Inc
Mr. Sheard is a Board Certified Patient Advocate specializing in healthcare navigation for rare diseases, particularly neurofibromatosis (NF). His advocacy is informed by 44 years of experience as a behavioral health professional and personal experience managing NF1. He is one of nine family members who is living successfully with NF and has also been a caregiver for his two children and father. He serves on the Board of Directors for Brainy Ridge summer camp, where he teaches self-advocacy to youth with various disorders and prepares them for transitioning to adult care. He is working as an NF Patient Advocate at Massachusetts General Hospital on the My NF Guide PEER Study. Additionally, he lobbies for NF research funding on Capitol Hill and reviews grant proposals for the CDMRP-NFRP. Driven by his professional and personal experiences, Mr. Sheard is passionate about empowering individuals with rare diseases to advocate for and access the care they need.
Christine Panza
Children's Tumor Foundation
Christine Panza
Children's Tumor Foundation
Christine was diagnosed with NF2-SWN at the age of 9 and is now 25 years old. Her NF2 journey has set in motion a deep interest in how the brain is put together and in what treatments might develop both in drug and surgical therapies. She holds a B.S. in Behavioral Neuroscience from Northeastern University, and last month, graduated from Boston University with a Masters Degree in Anatomy and Neurobiology. She is planning to pursue a Ph.D. in the future. Additionally, she is the Director of the Patient Outreach Committee of the Children’s Tumor Foundation Junior Board.
Eunice Lee
NF1 Patient
Eunice Lee
NF1 Patient
Eunice was diagnosed with NF1 at age seven. As part of her NF journey, she has undergone brain surgery to treat moyamoya disease and surgery to remove an MPNST. Eunice is an active NF advocate, serving as co-chair of the CTF Junior Board and as a member of the Southern California Shine a Light Walk Committee. She currently works as a Senior Associate Consultant, focusing on community engagement for energy, climate, and community planning projects. She is also pursuing a Master’s in Public Policy.
12:00
CTF Development Session
12:00
See beyond the limits of NF1-PN: Lean about a new treatment for adults and children with NF1-PN
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More information coming soon.
Angela Hirbe, MD, PhD
Washington University School of Medicine St. Louis
Angela Hirbe, MD, PhD
Washington University School of Medicine St. Louis
As a practicing medical oncologist who treats sarcoma, my research focuses on utilization of genomic information from sarcomas to better understand the pathogenesis of these tumors and to identify biomarkers and therapeutic targets for these aggressive cancers.
Tara Herington, RN
SpringWorks Therapeutics
Tara Herington, RN
SpringWorks Therapeutics
Tara leads Global Patient Access at SpringWorks Therapeutics, where she and her team are dedicated to helping individuals with NF1-PN access the support, services, and resources they need. Her work focuses on removing barriers—like cost and insurance concerns—so patients can start and stay on their prescribed treatment with confidence.
13:00
Lunch
14:00
Beyond Sound: Multi-sensory Alerts for a Safer Home
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Home safety for deaf and hard-of-hearing individuals is enhanced through diverse, accessible alert systems. Visual indicators like flashing lights, vibrotactile alerts through vibrations, and extra loud alarms can provide immediate, clear warnings during emergencies. These methods ensure that important signals are communicated effectively without relying on sound, empowering residents to respond swiftly to hazards. While there are stand alone devices that can alert you to an emergency, we'll also discuss how to integrate smarthome technologies, smartphones and wearables for notification options.
Tina Gonzales Childress, AuD
See.Hear.Communication.Matters.
Tina Gonzales Childress, AuD
See.Hear.Communication.Matters.
Tina Gonzales Childress, Au.D., CCC-A is an educational audiologist in the mainstream and residential school settings. She is also an award-winning presenter, adjunct lecturer, mentor for children and adults, and is active on various local, state and national Boards and Committees as well as social media. As a late-deafened adult with bilateral cochlear implants and who is fluent in ASL, she is able to seamlessly navigate between the Deaf and Hearing worlds. Her areas of expertise include assistive/access technology for visual and auditory communicators, advocacy to promote accessibility in venues such as the performing arts and virtual conference platforms, apps and psychosocial adjustment to hearing loss. Dr. Childress has created numerous online resources on a variety of technology and accessibility-related subjects in an effort to help individuals who are Deaf/Hard of Hearing connect to the world around them. Her resources can be found at http://TinaChildressAuD.com
14:00
Pool Side Hangout
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Join other teens attending the NF Summit to enjoy the pool & relax in the sun! Meet in Calvert Room to walk together, or find us at the pool!
14:00
The Importance of Mental Health & Resiliency in NF
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Living with neurofibromatosis (NF) can present emotional and psychological challenges. This talk will focus on the importance of mental health and resiliency, highlighting key skills to help manage these challenges. Participants will learn mindfulness techniques to reduce stress and enhance present-moment awareness, adaptive thinking strategies to reframe negative thoughts, and the role of acceptance in navigating uncertainty. We will also explore how social support and connection can strengthen emotional well-being and coping abilities.
Ethan Lester, PhD
Mass General Brigham
Ethan Lester, PhD
Mass General Brigham
Dr. Lester is a clinical psychologist at Massachusetts General Hospital, an Assistant Professor at Harvard Medical School, and core staff member of the Center for Health Outcomes and Interdisciplinary Research. Dr. Lester was the lead clinician on the Department of Defense Funded Clinical Trial for adults with NF1, NF2, and Schwannomatosis, and is the creator of the web-platform NF-Web, funded in part by CTF. This is Dr. Lester's 4th NF Summit.
15:00
Practical Tools for Building Resilience
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A continuation of Dr. Ethan Lester's Mental Health & Resiliency session, this workshop will provide opportunities for general questions, open discussion, and skill rehearsal to help integrate these strategies into everyday life. By the end of the session, participants will have a deeper understanding of how to build resilience and improve mental health in the context of living with NF.
Ethan Lester, PhD
Mass General Brigham
Ethan Lester, PhD
Mass General Brigham
Dr. Lester is a clinical psychologist at Massachusetts General Hospital, an Assistant Professor at Harvard Medical School, and core staff member of the Center for Health Outcomes and Interdisciplinary Research. Dr. Lester was the lead clinician on the Department of Defense Funded Clinical Trial for adults with NF1, NF2, and Schwannomatosis, and is the creator of the web-platform NF-Web, funded in part by CTF. This is Dr. Lester's 4th NF Summit.
15:45
Ice Cream Social
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Join us on the terrace outside the NF Summit Exhibit Hall for a sweet treat!
Sponsored by Alexion.
16:15
Make NF Visible Awards & Closing Session
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Join us to celebrate the work NF community members just like you have accomplished this year. We are stronger together!
Annette Bakker, PhD
CEO, Children's Tumor Foundation
Annette Bakker, PhD
CEO, Children's Tumor Foundation
Annette Bakker, a Ph.D. in Biochemistry, was an academic researcher for ten years - University Antwerp, Yale Medical School, and the Myology Institute Paris. Following this, she accumulated 15 years of experience in multiple executive leadership positions in Oncology R&D in big pharma and biotech. She holds over 50 publications and 5 patents (https://orcid.org/0000-0001-8420-7831).
Motivated by the realization that numerous groundbreaking discoveries fail to translate into clinical benefit, she joined the Children’s Tumor Foundation (CTF) in 2011 to deploy CTF's talent, time, and treasure (TTT) to help bridge the gaps between scientific discoveries and clinical benefits, particularly focusing on neurofibromatosis, a rare genetic disorder. In 2022, she was decorated Officer in the Order of Leopold by the king of Belgium for her bold approach and dedication to improving patients' lives.
Annette strongly believes that patient-centric research foundations hold a unique position in the R&D ecosystem. Organizations, such as CTF, are trusted partners for all stakeholders, with the same sense of urgency as the patients. As a FasterCures Changemaker and Chan Zuckerberg Initiative mentor, Annette is deeply committed to constructing an enterprise that not only benefits patients with NF but serves as a model for expediting drug discovery and development within the broader rare disease community.
Leanna Scaglione
2025 CTF Ambassador
Leanna Scaglione
2025 CTF Ambassador
Leanna Scaglione is 33 years old living with NF2-Related Schwannomatosis (NF2-SWN). Ever since being diagnosed at 16 years old, she has refused to live defined by her diagnosis.
From relearning to walk, completing three chemotherapy drug trials, and going through numerous surgeries she has defied the odds against her.
Most recently she has gone undergone surgery to remove her right vestibular schwannomma leaving her completely deaf in her right ear.
She continues to live her best life as an endurance runner and hopes to be the first person with NF2-SWN to complete the Abbott World Marathon Majors. She shares her story and experiences living with NF2-SWN in hopes to spread awareness, motivate her community and rally for a cure
19:00
Combined Walking Reception
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NF Summit guests are invited to join NF Conference attendees for a relaxed walking reception. Network and connect with NF researchers and clinicians.
19:00
Teen Track Movie Night
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Join other teens for a movie night - snacks provided!
Speakers
Simon Vukelj
Chief Marketing Officer, Children's Tumor Foundation
READ BIOSimon Vukelj
Chief Marketing Officer, Children's Tumor Foundation
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Katie Vanlandingham
Associate VP, Van Scoyoc Associates
READ BIOKatie Vanlandingham
Associate VP, Van Scoyoc Associates
Elizabeth O'Brien
Co-Founder/CEO, CureNFwithJack
READ BIOElizabeth O'Brien
Co-Founder/CEO, CureNFwithJack
John Manth
President, NF Network
READ BIOJohn Manth
President, NF Network
John Manth is the father of Leah Manth who was diagnosed with NF2 in 2007 when she was just 7 years old. John and his family are dedicated to finding meaningful treatments and a cure for NF2. John is the current President of the Board of Directors for the NF Network, as well as Chairman of the Board of Directors for NF Northeast. John Formally has served on the board of directors for NF2 BioSolutions as well as Advocure NF2. Since Leah’s diagnosis the Manth Family and Friends have raised $1,000,000 and sponsored 13 NF2 research studies. John is a staunch advocate for federal funding for NF research and assists in coordinating, training and mentoring NF families attending the NF Network’s annual trip to Washington DC. He has extensive experience in fund raising, non-profit organizational leadership, advocacy, and NF outreach. John, his wife Linda and Dr. Scott Plotkin co-wrote a booklet entitled “Understanding NF2” published by NF Network. He has also written articles on various NF topics. Additionally, he has presented at NF Symposiums and has facilitated many NF family and patient discussions. John teaches undergraduate courses in Violence, Global Crime, and Comparative Criminal Justice at Hilbert College in Hamburg, NY as well as a Criminal Justice Career Program to high school students. He holds a Bachelor of Arts degree in Criminology from University of Maryland and a Master of Arts degree in Criminal Justice and Education from Buffalo State College.
Kate Doerge
Co-Founder/CEO, Penny's Flight Foundation
READ BIOKate Doerge
Co-Founder/CEO, Penny's Flight Foundation
"It’s not your lifespan that matters, it’s your wingspan.” Kate Doerge is a motivational speaker, author, non-profit founder, and brand strategist. Her mission is to inspire others to live with joy, connect powerfully, and lead with purpose. Kate is the Co-Founder of the nonprofit Penny’s Flight Foundation. She is the author of a new book on navigating grief and life’s challenges with love, connection and positivity that will be published June 3rd, 2026. Her TEDx talk: “How to Find Your Purpose” will be released Summer 2025. A motivational speaker, Kate gives talks at corporations, schools, and conferences on a range of topics including conquering challenges, finding your purpose, new approaches to grief and loss, career changes, midlife changes and mental health. Talks include Post Traumatic Growth, 5 Actions Through Grief, How to Shine Your Light, Creating a Purpose-Driven Brand and more. A non-profit founder, and transformational board member, Kate is leader for purpose-led initiatives. With her husband Chad Doerge, Kate launched Penny’s Flight Foundation in honor of her daughter Penny who passed away from Neurofibromatosis complications in 2022. The Foundation is dedicated to finding a cure and funding research for Neurofibromatosis. There are over 100 Penny’s Flight chapters at high schools and colleges across the country dedicated to inspiring young people to make an impact at any age. A strategist for top brands and Operating Partner at Traub, Kate is known for her expertise on communication strategy, partnerships, rebrands, transformation, and mission-inspired initiatives. Current and former clients include L’Oréal, H&M, Kate Spade, Value Retail- The Bicester Collection, Tag Heuer, and Oscar de la Renta. Kate is the Co-Chair of the Board of Advisors for the Hospital for Special Surgery. She is a member of the Board of Trustees and the HSS Pediatric Council. For almost two decades, Kate has Co-Chaired HSS’ largest and most successful fundraiser for the Pediatric Pavilion, raising more than $27 million. Kate is a Board Member and strategic advisor for the Penny Doerge Adaptive Academy (PDAA) at the Hospital for Special Surgery. The Academy organizes adaptive programs for kids and teens facing a range of disabilities.
Annette Bakker, PhD
CEO, Children's Tumor Foundation
READ BIOAnnette Bakker, PhD
CEO, Children's Tumor Foundation
Annette Bakker, a Ph.D. in Biochemistry, was an academic researcher for ten years - University Antwerp, Yale Medical School, and the Myology Institute Paris. Following this, she accumulated 15 years of experience in multiple executive leadership positions in Oncology R&D in big pharma and biotech. She holds over 50 publications and 5 patents (https://orcid.org/0000-0001-8420-7831).
Motivated by the realization that numerous groundbreaking discoveries fail to translate into clinical benefit, she joined the Children’s Tumor Foundation (CTF) in 2011 to deploy CTF's talent, time, and treasure (TTT) to help bridge the gaps between scientific discoveries and clinical benefits, particularly focusing on neurofibromatosis, a rare genetic disorder. In 2022, she was decorated Officer in the Order of Leopold by the king of Belgium for her bold approach and dedication to improving patients' lives.
Annette strongly believes that patient-centric research foundations hold a unique position in the R&D ecosystem. Organizations, such as CTF, are trusted partners for all stakeholders, with the same sense of urgency as the patients. As a FasterCures Changemaker and Chan Zuckerberg Initiative mentor, Annette is deeply committed to constructing an enterprise that not only benefits patients with NF but serves as a model for expediting drug discovery and development within the broader rare disease community.
Tracy Wirtanen
Littlest Tumor Foundation
READ BIOTracy Wirtanen
Littlest Tumor Foundation
“We invest in the NF community with impactful programming. We lead NF Family Wellness Retreats (free for NF families), the NF Young Adult Leadership Program, and spearhead the NF Collective. We see children soar, moms connect, and young adults find their voices. It is amazing and an honor to be part of it all.”
Murray McCarten
NF Collective & NF Team FoundationT
READ BIOMurray McCarten
NF Collective & NF Team FoundationT
Murray has served as the Executive Director of the NF Team since December 2021. Prior to that, he served as a board member of the NF Team from 2014 to present. Murray has also served as the NF Team representative with the NF Collective since 2020. Prior to his work with the NF Team, Murray served as a volunteer fundraiser with the Children’s Tumor Foundation from 2008-2011. By day, Murray serves students with disabilities as a special education teacher, and has a direct connection to Neurofibromatosis through his family.
Tara Herington, RN
SpringWorks Therapeutics
READ BIOTara Herington, RN
SpringWorks Therapeutics
Tara leads Global Patient Access at SpringWorks Therapeutics, where she and her team are dedicated to helping individuals with NF1-PN access the support, services, and resources they need. Her work focuses on removing barriers—like cost and insurance concerns—so patients can start and stay on their prescribed treatment with confidence.
Roxie Schoppet
Panel member
READ BIORoxie Schoppet
Panel member
Besides myself, all three of my children have NF1.
Leanna Scaglione
2025 CTF Ambassador
READ BIOLeanna Scaglione
2025 CTF Ambassador
Leanna Scaglione is 33 years old living with NF2-Related Schwannomatosis (NF2-SWN). Ever since being diagnosed at 16 years old, she has refused to live defined by her diagnosis.
From relearning to walk, completing three chemotherapy drug trials, and going through numerous surgeries she has defied the odds against her.
Most recently she has gone undergone surgery to remove her right vestibular schwannomma leaving her completely deaf in her right ear.
She continues to live her best life as an endurance runner and hopes to be the first person with NF2-SWN to complete the Abbott World Marathon Majors. She shares her story and experiences living with NF2-SWN in hopes to spread awareness, motivate her community and rally for a cure
David Klauder
Patient
READ BIODavid Klauder
Patient
I have Schwannomatosis. It all started in 1996 when I was 26. I had sciatica in my right back/leg. I had an
MRI done that showed a tumor on my L5/S1. I then had a needle biopsy, which was not the best idea
since Schwannoma’s grow in the nerve sheath and it felt like I was hit with a 220 electric line on my
back, which came back as a Schwannoma from the pathology department. I then decided to have
surgery on the tumor (1997). My surgeon “shelled” out as much of the tumor he could without cutting
my nerve. Obviously, the tumor returned since he was not able to get the whole thing. We then tried
radiation treatments (1998) on the tumor which did nothing. Then I decided to have another surgery
(1999) which removed some more of the tumor. At this point I was done with surgery on that tumor.
Fast forward to 2000, I was playing basketball with my niece and the ball hit my right bicep and sent
radiating pain down my arm. I then met with a neurologist. After hearing about my surgeries and arm
pain he said “we are going to do MRIs of your brain, cervical, thoracic, and lumbar to see if you have
Neurofibromatosis. After getting the MRI’s, which showed several tumors, I found my own geneticist at
The University of Penn. I met Dr. Katherine Nathanson who diagnosed me with Schwannomatosis.
Around the same time, I received the Schwannomatosis diagnosis I saw a surgeon about the tumor in
my right bicep. I did not pull the trigger on removing it since he gave me a 50/50 chance of losing
function in my right arm.
Fast forward to 2003 when I met my ex-wife, Jen. After dating for a year then being engaged for a year,
we got married in 2005 and decided to move to Myrtle Beach to be close to her parents. Before we
moved to Myrtle Beach, I spoke with Dr. Nathanson about finding a geneticist down south. She
recommended I go to Greenwood Genetics in Charleston, SC. Shortly after arriving in Myrtle Beach, I
found a new geneticist at Greenwood Genetics, Dr. Lyons. I had my first appointment with him in 2007.
Jen came with me to the appointment. This was important for me because Jen was pregnant with our
son Chase, and I wanted to both know the chances of passing the Schwannomatosis on to Chase. We
both learned more about the genetics of both the Schwannomatosis and Gitelman's Syndrome, my
other genetic defect. At one point in the appointment Jen started to cry and left the examination room
to compose herself. I think the reality of the possibility of passing on either of my genetic defects to
Chase became more apparent to her. After the appointment with Dr. Lyons, we went home and did not
talk much more about either genetic defect.
I was still establishing myself in Myrtle Beach and got hired on as a police officer with Coastal Carolina
University. I was living my life and I put my Schwannomatosis a bit on the back burner. After doing some
research I found Dr. Plotkin at The Neurofibromatosis Clinic at Massachusetts General Hospital and
made an appointment to meet with him regarding my Schwannomatosis. After meeting with him he
advised me that I needed to get some updated MRI’s especially of my brain. When I returned to Myrtle
Beach, I had a brain MRI completed (2010). A small tumor was found on the MRI, but it was so small that
we would just keep checking on it periodically. Around this same time, my marriage was not working
out, and Jen and I got divorced.
After my divorce I did not follow my Schwannomatosis as closely as I should have been. In retrospect I
should have continued to get yearly brain MRIs, but I was “living my life.” I met my second wife, Tammy
in 2014. We got married in 2015. In the summer of 2016, I got promoted to Lieutenant at my police
department. As part of the promotion, I had to go to the midnight shift, which I was reluctant to do.
Midnight shift is extremely rough on a person's health, especially with two genetic defects like
Gitelman's Syndrome and Schwannomatosis. While working the midnight shift, I got bad headaches.
The pain would be that of a migraine. But it would be primarily in my left eye. At times it felt like
someone was stabbing me in my eye with an ice pick. I tried taking Tylenol, but the pain was too bad. I
decided to make a doctor's appointment at Doctors Care. I was an established patient at Doctors Care,
but it was not a primary doctor, which I needed for getting referrals. At this appointment, I met Dr.
Eaton. When I told Dr. Eaton about my headaches and eye pain, he told me I needed to get a brain MRI.
He knew from my medical history that it could be a tumor causing my symptoms. He told me he would
schedule an MRI but I needed to get a primary doctor so they could refer me to a neurologist after my
MRI results came back. He told me his wife was a primary care doctor in Conway Physicians Group. I
made an appointment with her and scheduled the MRI. After getting the MRI she referred me to a
neurologist so they could help with my eye pain and read the results from the MRI when they were
complete. I then went to see my neurologist, Dr. Sandoz, to go over the results from my MRI. I
remember him sitting me down in front of two monitors. One of the monitors had my MRI from 2010
that showed my tumor the size of a dot. The other monitor had my 2016 MRI which showed that the
tumor had significantly grown from 2010. Dr. Sandoz referred me to The Medical College of South
Carolina, MUSC. The first doctor I met was a Gamma Knife doctor Dr. Joseph Jenrette. He told me my
brain tumor was too close to my brainstem to do Gamma Knife. He then sent me across the street to
Neurosurgeon Dr. Alex Vandergrift. When I met with Dr. Vandergrift the first thing he said to me was “If
you don’t do anything it would be your undoing!” It was at that point that I knew I could die from this
brain tumor. He asked me if I had any children, and I told him I had my son Chase. Since it was close to
Christmas, he told me to go have Christmas with my son and come back on January 6, 2017, and he
would remove my tumor. I went home and had two incidents that helped me stay positive going into
my surgery. First, I received a call from my then wife Tammy’s brother Danny. Danny gave me a very
cool pep talk about the power of positivity. He talked about how research has been done that shows
that patients who go into surgery with a positive attitude recover better than patients who go into
surgery with a negative attitude. Our conversation was very uplifting and put me in a great mindset.
The other incident occurred at the MRI center while I was getting my final MRIs before the surgery. An
older gentleman heard me talking to the MRI Tech and when she walked away, he began a conversation
with me. He said he heard my story and wanted to pray with me. He asked me to hold my hand, and
we prayed. He prayed for God to guide the surgeon hands and to remove my tumor. At this point most
of my anxiety about the surgery left my body and I was ready for the surgery. The surgery was a success
and Dr. Vandergrift removed the whole tumor so none of the tumor would grow back. Dr. Vandergrift
saved my life that day with the help of God guiding his hands.
Since my brain surgery my journey with Schwannomatosis has shifted to more doctors’ checkups to
monitor my schwannomas. On April 26, 2024, I had surgery to remove the schwannoma in my right
humorous at Massachusetts General Hospital by Dr. Justin Brown. After 20+ years he removed the
whole tumor and did not damage my radial nerve. I still have full function in my right arm thanks to Dr.
Brown. I’ve gotten more involved with the CTF community in recent years and would like to get more
involved with CTF when I retire from my job as a police officer
Angela Hirbe, MD, PhD
Washington University School of Medicine St. Louis
READ BIOAngela Hirbe, MD, PhD
Washington University School of Medicine St. Louis
As a practicing medical oncologist who treats sarcoma, my research focuses on utilization of genomic information from sarcomas to better understand the pathogenesis of these tumors and to identify biomarkers and therapeutic targets for these aggressive cancers.
Andrea Malta
N/A
READ BIOAndrea Malta
N/A
My name is Andrea Malta, i am a 24 year-old native of Los Angeles, California, and a first-generation Mexican-American. Fluent in Spanish And English. I’m the youngest child and the only one in my family with NF
At the age of four months, I was diagnosed with neurofibromatosis type one Further medical examinations, including an MRI, revealed a brain tumor affecting a significant portion of my brain. At 18 months, i had my first surgery. It was a full cranial, where they opened my head for one side to another. Enduring a series of more than 15 surgeries, including seven extensive cranial procedures, has presented ongoing challenges. I grapple with mobility issues, legal blindness in my left eye, and difficulties in comprehension due to my learning disabilities, compounded by an ADHD diagnosis.
Stephanie Reeve
Nurse/Caregiver
READ BIOStephanie Reeve
Nurse/Caregiver
Stephanie holds a Master’s degree in Nursing and works in clinical development at a leading pharmaceutical company. With a strong background in patient care and a deep commitment to medical research, Stephanie brings both professional expertise and personal passion to the field. As a parent to a daughter with neurofibromatosis type 1, Stephanie has experienced the healthcare system not only as a clinician but also a caregiver. This dual perspective has fostered a profound dedication to patient advocacy. Whether in the workplace or at home, Stephanie is driven by a mission to ensure that every patient’s voice is heard and their needs are met with compassion and integrity.
Kim Snipes
CTF, Board of Directors
READ BIOKim Snipes
CTF, Board of Directors
Kim is a seasoned financial services and insurance executive with over 25 years of CIO, technology & operations leadership spanning a broad range of technology disciplines and lines of business. Leveraging her unique blend of expertise in business, technology, and operations, she is known for successfully utilizing modern technology strategies, digital experiences and automation to drive business transformation. Her client-centric leadership vision has led to differentiated end-to-end client experience. Kim excels at driving enterprise performance and change in highly regulated industries and fosters a proactive risk management culture. Her collaborative leadership style and ability to build relationships across all functions promotes high-performing, empowered teams that deliver sustainable value and innovation. Kim’s expertise in leveraging technology to streamline and transform processes while providing risk oversight, coupled with her extensive network of partners, makes her an asset to any organization’s board.
Currently, Kim serves as the commercial technology and operations EVP at Key Bank responsible for architecting the transformation of commercial client experiences for business banking, middle market, and institutional clients. The commercial business is a full-service corporate bank focused on serving the needs of clients in seven industry sectors: consumer, energy, healthcare, industrial, public sector, real estate, and technology. In her role, Kim is also responsible for driving the commercial AI strategy to transform both the employee and client experience. Within twelve months of building a newly formed operating unit, Kim’s transformation agenda achieved a 33% improvement in operating efficiency, increased revenue to the bank and delivered a markedly higher client satisfaction.
In addition to her commercial experience, Kim served as Key Bank’s CIO and operations leader from 2019 to 2023 for the consumer bank where she owned the technology portfolio supporting the consumer bank and digital portfolio as well as the operations for the wealth, investment services and treasury services. While in this role, she successfully delivered on multiple technology modernization and transformation efforts in the areas of mortgage lending, non-real estate lending, collections, core banking and architected and launched a digital-only affinity bank for doctors in less than six months.
Prior to Key Bank, Kim served in CIO roles for leading financial institutions including USAA, Capital One, and Bank of America where she has led organizations of over 7000 teammates and managed billion-dollar financial plans. In her executive roles, Kim regularly presents to the Board of Directors as well as banking regulators to communicate a vision, roadmap and outcomes for strategies aligned with the overall organization priorities.
Kim serves on the board of Children’s Tumor Foundation and the campaign committee focused on developing a new venture philanthropy fund to partner with bio-techs and pharmaceuticals to accelerate the discovery and development of treatments for NF. She is also a passionate advocate of women in technology, having served in leadership roles on several internal advocacy groups as well as the executive board of Women Who Code, an organization focused on advancing women in technology through network support and learning opportunities.
Irene Morganstern, PhD
Children's Tumor Foundation
READ BIOIrene Morganstern, PhD
Children's Tumor Foundation
Phioanh Leia Nghiemphu, MD
UCLA
READ BIOPhioanh Leia Nghiemphu, MD
UCLA
Dr. Nghiemphu is a Neuro-Oncologist with training in Neurology and is the Director of Neuro-Oncology Clinical Service and the Director of the Neuro-Oncology Fellowship Program. She is also the Clinical Director of the UCLA Neurofibromatosis and Schwannomatosis Program. She has a special interest in the treatment of patients with primary brain & nervous system tumors using individualized molecular targeted therapies.
Marco Giovannini, MD, PhD
UCLA
READ BIOMarco Giovannini, MD, PhD
UCLA
Marco Giovannini, M.D.; Ph.D. is Professor-in-Residence of Head and Neck Surgery at the David Geffen School of Medicine of the University of California Los Angeles (UCLA) and Scientific Director of the UCLA Comprehensive Neurofibromatosis and Schwannomatosis Program. A native of Italy, Dr. Giovannini earned his M.D.;Ph.D. at the University of Bologna. He conducted research in France at the Institut National Recherche Sante Medicale (INSERM) for many years, as the Head of the “Functional Genomic of Solid Tumors” Unit, in Paris. A molecular geneticist by training, Marco Giovannini is a physician-scientist who conducts laboratory and clinical research in the field of neurofibromatosis and schwannomatosis. His laboratory, which has been continuosly funded by the DoD for over 20 years, develops genetically engineered models to dissect molecular mechanisms of tumorigenesis and to test new therapeutic options and studies mechanism of action of treatments in NF/SWN patients. Dr. Giovannini received the 2021 Von Recklinghausen Award of the CTF and the 2022 Theodor Schwann Award of the European NF Group.
Kara Anstett, MS, CGC
NYU Langone Health
READ BIOKara Anstett, MS, CGC
NYU Langone Health
Genetic Counselor for the NYU Comprehensive Neurofibromatosis Center since 2015, caring for adults and children with neurofibromatosis and schwannomatosis.
Nina Lester, LMHC, RDMT, PMH-C
Licensed Mental Health Counselor
READ BIONina Lester, LMHC, RDMT, PMH-C
Licensed Mental Health Counselor
Nina Lester is a licensed mental health counselor and a somatically trained psychotherapist (Naropa University, Boulder CO). She primarily works as a clinical supervisor and mental health counselor for the Massachusetts Early Intervention system, supporting children with developmental delays and disabilities, their families, and the clinicians who work with them. Her clinical interests include maternal mental health, early childhood disability populations, and supporting health professionals working in complex care settings. Her approach to wellness utilizes the inherent wisdom of the body to support well-being and connectedness to self and others. She is additionally certified as a dance and movement therapist and has facilitated workshops and classes in mindful movement techniques (e.g., yoga, dance) in various therapeutic and educational settings.
Carlos Romo, MD
Johns Hopkins University School of Medicine
READ BIOCarlos Romo, MD
Johns Hopkins University School of Medicine
Dr. Romo is an Assistant Professor of Neurology, Oncology and Medicine at the Johns Hopkins University School of Medicine, an attending physician in the Johns Hopkins Comprehensive Neurofibromatosis Center, and the Director of Clinical Research of the Neurofibromatosis Therapeutic Acceleration Program. His research interests include early phase clinical trials for the treatment of neurofibromatosis and gliomas.
Heather Sheeley-Johns
NF2 patient
READ BIOHeather Sheeley-Johns
NF2 patient
An NF2 Scwannomatosis patient doing the best I can to navigate life and NF!
Shivani Ahlawat, MD
Johns Hopkins University
READ BIOShivani Ahlawat, MD
Johns Hopkins University
Dr. Shivani Ahlawat is an Associate Professor at the Russell H. Morgan Department of Radiology and Radiological Science in Johns Hopkins School of Medicine and also serves as the musculoskeletal imaging fellowship director. Dr. Ahlawat’s clinical and research activities focus on advanced magnetic resonance imaging (MRI) techniques, specifically the detection and characterization of peripheral nerve injury and soft tissue tumors including peripheral nerve tumors, particularly in the setting of peripheral nerve tumor syndromes. Her areas of interest include whole body MRI in the setting of Neurofibromatosis type 1 (NF1) and schwannomatosis with emphasis on quantitative, non-contrast MRI techniques such as diffusion weighted imaging and apparent diffusion coefficient mapping in characterization of bone and soft tissue tumors.
Eunice Lee
NF1 Patient
READ BIOEunice Lee
NF1 Patient
Eunice was diagnosed with NF1 at age seven. As part of her NF journey, she has undergone brain surgery to treat moyamoya disease and surgery to remove an MPNST. Eunice is an active NF advocate, serving as co-chair of the CTF Junior Board and as a member of the Southern California Shine a Light Walk Committee. She currently works as a Senior Associate Consultant, focusing on community engagement for energy, climate, and community planning projects. She is also pursuing a Master’s in Public Policy.
Andrés Lessing
Patient Representative
READ BIOAndrés Lessing
Patient Representative
Andrés Lessing was diagnosed with Neurofibromatosis Type 1 (NF1) in Argentina at nine-months-old, long before the NF1 gene's discovery. Throughout his life, he has channeled his various NF related challenges into impactful community action and research advocacy, approaching his work con ganas – with heartfelt dedication. For years, he and his family have been active in the NF community. Driven by the need for research breakthroughs, Andrés has served as a Consumer Reviewer for the CDMRP's Neurofibromatosis Research Program (NFRP) and as a Patient Representative for the REiNS International Collaboration, contributing to multiple working groups. Inspired to elevate the patient perspective, he has authored and co-authored peer-reviewed articles and consistently lobbies Congress for federal NF research funding with the NF Advocacy Network.
Professionally, Andrés is a Technical Business and Compliance Senior Manager at Blue Cross Blue Shield of Massachusetts, holding an Economics degree from Brandeis University and an MBA from Boston College. His commitment extends locally as a Town Meeting Member and as Treasurer for NF Northeast. Andrés and his wife, Lindsay, are also proud, busy parents of teenage twins.
Sanna Lokhandwala, PhD
Boston Children's Hospital/Harvard Medical School
READ BIOSanna Lokhandwala, PhD
Boston Children's Hospital/Harvard Medical School
Sanna is a T32 Postdoctoral Fellow at the Neuroscience of Risk and Development Lab at Boston Children’s Hospital, Harvard Medical School. She obtained her PhD in Psychological & Brain Sciences (Developmental Science) from the University of Massachusetts Amherst in 2023 where her research focused on sleep and cognitive development in early childhood. As a Fellow, Sanna’s work focuses on how aspects of sleep and the brain relate to psychopathology risk in adolescence.
Tina Gonzales Childress, AuD
See.Hear.Communication.Matters.
READ BIOTina Gonzales Childress, AuD
See.Hear.Communication.Matters.
Tina Gonzales Childress, Au.D., CCC-A is an educational audiologist in the mainstream and residential school settings. She is also an award-winning presenter, adjunct lecturer, mentor for children and adults, and is active on various local, state and national Boards and Committees as well as social media. As a late-deafened adult with bilateral cochlear implants and who is fluent in ASL, she is able to seamlessly navigate between the Deaf and Hearing worlds. Her areas of expertise include assistive/access technology for visual and auditory communicators, advocacy to promote accessibility in venues such as the performing arts and virtual conference platforms, apps and psychosocial adjustment to hearing loss. Dr. Childress has created numerous online resources on a variety of technology and accessibility-related subjects in an effort to help individuals who are Deaf/Hard of Hearing connect to the world around them. Her resources can be found at http://TinaChildressAuD.com
Ethan Lester, PhD
Mass General Brigham
READ BIOEthan Lester, PhD
Mass General Brigham
Dr. Lester is a clinical psychologist at Massachusetts General Hospital, an Assistant Professor at Harvard Medical School, and core staff member of the Center for Health Outcomes and Interdisciplinary Research. Dr. Lester was the lead clinician on the Department of Defense Funded Clinical Trial for adults with NF1, NF2, and Schwannomatosis, and is the creator of the web-platform NF-Web, funded in part by CTF. This is Dr. Lester's 4th NF Summit.
Steven Sheard, MA, BCPA
Brainy Ridge, Inc
READ BIOSteven Sheard, MA, BCPA
Brainy Ridge, Inc
Mr. Sheard is a Board Certified Patient Advocate specializing in healthcare navigation for rare diseases, particularly neurofibromatosis (NF). His advocacy is informed by 44 years of experience as a behavioral health professional and personal experience managing NF1. He is one of nine family members who is living successfully with NF and has also been a caregiver for his two children and father. He serves on the Board of Directors for Brainy Ridge summer camp, where he teaches self-advocacy to youth with various disorders and prepares them for transitioning to adult care. He is working as an NF Patient Advocate at Massachusetts General Hospital on the My NF Guide PEER Study. Additionally, he lobbies for NF research funding on Capitol Hill and reviews grant proposals for the CDMRP-NFRP. Driven by his professional and personal experiences, Mr. Sheard is passionate about empowering individuals with rare diseases to advocate for and access the care they need.
Vanessa Merker, PhD
Massachusetts General Hospital
READ BIOVanessa Merker, PhD
Massachusetts General Hospital
Vanessa Merker, PhD is a health services researcher at Massachusetts General Hospital (MGH) and an Assistant Professor of Neurology at Harvard Medical School. Dr. Merker serves as the Director of Research at the MGH Family Center for Neurofibromatosis and Schwannomatosis, where she conducts research to improve the accessibility, quality, and patient-centeredness of clinical trials and clinical care for all types of NF.
Carly Paterson
Patient-Centered Outcomes Research Institute
READ BIOCarly Paterson
Patient-Centered Outcomes Research Institute
Carly Paterson is a Senior Advisor to the Chief of Comparative Clinical Effectiveness Research (CER) at the Patient-Centered Outcomes Research Institute. In this role, she supports PCORI’s longitudinal topic theme advancement and efforts to optimize funding strategies and refine pre-award activities to maximize the impact and yield of PCORI’s patient-centered CER portfolio.
Prior to her current role as a Senior Advisor, Paterson was an Associate Director and Program Officer with the PCORI Systems Comparative Clinical Effectiveness Research unit for several years, contributing as a leader and mentor within the CER division supporting key CER areas such as telehealth, advanced illness, and rare disease. Prior to PCORI, Paterson was a postdoctoral fellow with the National Cancer Institute Cancer Prevention Fellowship Program, where her work focused on symptom management and palliative care for those with advanced cancer.
Paterson earned her doctorate from the University of South Florida College of Nursing, a Master of Public Health degree from the Dartmouth Institute for Health Policy and Clinical Practice, and her Bachelor of Science in Nursing degree from SUNY University at Buffalo.
McKinnon Galloway
McKinnon Galloway LLC
READ BIOMcKinnon Galloway
McKinnon Galloway LLC
McKinnon is a deaf/facial paralysis NF2 advocate, brain surgery survivor, and content creator dedicated to raising awareness about deafness, facial paralysis, and balance challenges. Diagnosed at 16, she's turned adversity into advocacy, sharing real-life strategies for thriving with NF2. Through her platform, she promote accessibility, resilience, and inclusion for the Deaf and Hard of Hearing community. Passionate about empowering others, she brings honesty, humor, and practical tools to help others turn struggles into strength
Christine Panza
Children's Tumor Foundation
READ BIOChristine Panza
Children's Tumor Foundation
Christine was diagnosed with NF2-SWN at the age of 9 and is now 25 years old. Her NF2 journey has set in motion a deep interest in how the brain is put together and in what treatments might develop both in drug and surgical therapies. She holds a B.S. in Behavioral Neuroscience from Northeastern University, and last month, graduated from Boston University with a Masters Degree in Anatomy and Neurobiology. She is planning to pursue a Ph.D. in the future. Additionally, she is the Director of the Patient Outreach Committee of the Children’s Tumor Foundation Junior Board.
Ashley Cannon, MS, CGC, PhD
InformedDNA
READ BIOAshley Cannon, MS, CGC, PhD
InformedDNA
Ashley Cannon, PhD, MS, CGC is a Clinical Program Manager at InformedDNA and the Research Project Coordinator for University of Alabama at Birmingham (UAB) Genetic Counseling Program. As a clinician scientist, Ashley worked as a genetic counselor in the Neurofibromatosis Clinic at UAB, coordinated NF1 clinical trials, performed research focused on cutaneous neurofibromas, and was awarded the Francis S. Collins Scholars Program in Neurofibromatosis Clinical and Translational Research.
Heather Thompson, PhD CCC-SLP, S-LP(C)
California State University, Sacramento
READ BIOHeather Thompson, PhD CCC-SLP, S-LP(C)
California State University, Sacramento
Heather L. Thompson, PhD., CCC-SLP (she/her) is a licensed Speech-Language Pathologist (SLP), Professor, and Department Chair of the Department of Communication Sciences and Disorders at California State University, Sacramento. She is SLP Discipline Director for the Northern California Leadership Education in Neurodevelopmental Disabilities (NorCal LEND) program, which is housed at the University of California, Davis MIND Institute. She also holds a Language, Speech and Hearing Services Credential and provides services as a speech-language pathologist at Sacramento City Unified School District and Shriners Children’s Hospital Northern California.
She has an interest in interdisciplinary clinical training for practitioners serving individuals with neurodevelopmental concerns. Her research interests include clinical trials and patient reported outcome measures. She has a specific interest in speech-language development of children with neurodevelopmental concerns including neurofibromatosis and the other rasopathies and evaluating assessments and interventions for and with individuals from these populations.
Amedeo Azizi, MD
Medical University of Vienna
READ BIOAmedeo Azizi, MD
Medical University of Vienna
Assoc. Prof. Dr. Amedeo A. Azizi is head of the Neurofibromatosis expertise centre at the Department of Paediatrics and Adolescent Medicine, Medical University of Vienna (MUV), Austria. After graduation at the University of Vienna in 2003 A. Azizi started his training as paediatrician at the General hospital in Vienna where he also completed his specialisation as paediatric neuro-oncologist and works as attending physician. He became head of the Neurofibromatosis program in 2017 and was appointed as associate professor in 2018. The same year the NF centre was nominated and approved as associated centre to the European Reference Network for Genetic Tumour Risk Syndromes (ERN GENTURIS). A. Azizi is part of the clinical care advisory board (CCAB) of CTF Europe since 2020.
A. Azizi’s area of expertise and main research areas include paediatric low grade (LGG) and high grade glioma (HGG). He is member of the SIOPE LGG working group and the Austrian lead of the SIOP Europe low grade glioma study. A main focus lies on the high-risk group of infants with hypothalamic glioma. He is involved in multiple clinical trials, partly as principal investigator or member of steering committees.
In the Neurofibromatosis clinic Azizi follows paediatric patients with NF1, NF2 and Schwannomatosis with and without malignancies. In Neurofibromatosis type 1 (NF1) associated conditions A. Azizi has focussed on NF1 associated optic pathway glioma with special interest in identifying factors associated with visual outcome. Furthermore, he studies the potential of functional imaging methods such as FDG-PET in the early detection of NF1 associated malignant peripheral nerve sheath tumours in asymptomatic patients in order to identify premalignant and undiagnosed lesions.
Karin Walsh, PsyD
Children's National Hospital, The George Washington University School of Medicine
READ BIOKarin Walsh, PsyD
Children's National Hospital, The George Washington University School of Medicine
Karin S. Walsh, Psy.D. holds a doctoral degree in Clinical Psychology and received advanced post-doctoral training in pediatric neuropsychology. She is a pediatric neuropsychologist in the Division of Neuropsychology at Children’s National Hospital and Professor of Pediatrics and Psychiatry & Behavioral Medicine at the George Washington University School of Medicine and Health Services in Washington DC, USA. She has 18 years’ experience as a clinical neuropsychologist and scientist caring for and studying children with genetic disorders such as neurofibromatosis type 1 and other RASopathies, pediatric brain tumors, and blood disorders including leukemia and hemophilia. Dr. Walsh is an active clinical researcher who has received multiple grants for her research. She conducts research and publishes in the areas of cognitive outcomes in pediatric cancers, and hematologic disorders, and congenital disorders, with particular focus on executive functions and the interconnections of the cerebellum and cortex and associated contributions of the cerebellum to higher cognitive functions. She is also involved in intervention research, specifically targeting learning and executive function difficulties in pediatric clinical populations. Her expertise has resulted in her serving as a consultant or reviewer to various private and federal organizations including the Department of Defense, and pharmaceutical companies. Dr. Walsh holds several leadership positions in international committees and groups. She is past president of the Posterior Fossa Society, current chair of the Neurocognitive Committee within the NF Clinical Trials Consortium, and previous chair of the neurocognitive committee for the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) working group. She is also a member of multiple working groups and scientific committees focused on developing and carrying out high level research that will ultimately benefit children and families affected by acquired and congenital disorders. Finally, Dr. Walsh is an active participant in the education and mentorship of pre- and post-doctoral students and junior faculty in psychology, neuropsychology, and medicine.
Allan Belzberg MD
Johns Hopkins School of Medicine
READ BIOAllan Belzberg MD
Johns Hopkins School of Medicine
Dr. Belzberg is professor of Neurosurgery and Plastic & Reconstructive Surgery at the Johns Hopkins School of Medicine. He holds the George J Heuer Chair in Neurosurgery and has a clinical focus in spine and peripheral nerve surgery. He is Director of Peripheral Nerve Surgery at Johns Hopkins Hospital, All Children’s Hospital, and the Kennedy Krieger Institute. He graduated from the University of British Columbia, attended Medical School and residency at the University of Calgary, interned at McGill University and completed Fellowship training at Johns Hopkins.
As a member of the multi-disciplinary comprehensive Neurofibromatosis Clinic at Johns Hopkins he treats patients suffering from a variety of benign and malignant tumors. His expertise in both spinal and peripheral nerve surgery allow him to remove the most challenging nerve tumors and reconstruct both the spine and peripheral nerves as required.
Dr. Belzberg is interested in neuropathic pain and is the co-director of the Neurosurgery Pain Research Institute at Johns Hopkins. He has a publication record concerning the pathophysiology of painful nerves including those related to NF and nerve injury. His laboratory described a novel animal model of neuropathic pain that allows the investigator to study both stimulus evoked mechanical hyperalgesia and pain phenotype change of axons exposed to degenerating axons (neuroma). Dr. Belzberg is involved in basic science research concerning gene regulation in Schwannomatosis. His research efforts also include understanding aspects of neural regeneration.
Dr. Belzberg has previously served as the President of the American Society for Peripheral Nerve. He has served as a scientific advisor to a broad spectrum of health care entities including AstraZeneca, Neurofibromatosis Inc., Spinal Kinetics and Medtronic. He has lectured in more than 30 countries, published over 150 peer reviewed papers and his contributions to clinical medicine have changed the practice.
Chelsea Kotch MD, MSCE
Children's Hospital of Philadelphia
READ BIOChelsea Kotch MD, MSCE
Children's Hospital of Philadelphia
Dr. Chelsea Kotch is a Pediatric Neuro-Oncologist at the Children’s Hospital of Philadelphia and Assistant Professor of Pediatrics at the University of Pennsylvania who cares for children and young adults in the Neuro-Oncology and Neurofibromatosis Multi-Disciplinary Clinics. She is a clinical researcher and Francis S Collins Scholar in NF Translational and Clinical Research with a focus on improving outcomes for individuals with NF1-associated tumors through advanced epidemiologic research methods and early phase clinical trials.
Scholarship Sponsorship
The NF Summit exists to bring together and empower all members of the NF community. Many in the NF community, however, cannot attend because of financial limitations. In response to this inequity, CTF created the NF Summit Scholarship Program. Over the past two years, CTF has awarded 70 scholarships with support from B the Difference and a small group of individual donors. Our dream is to be able to say YES to every scholarship applicant in 2025 and all of the years to come. Will you consider making a donation to make that dream a reality?
$1500 - Provides one Individual Scholarship to cover travel, hotel, and registration fees for one adult.
$1800 - Provides a Family Scholarship to cover travel, hotel, and registration fees for two adults and unlimited minors in their care.
Donors to the NF Summit Scholarship Program will receive the following in appreciation of their generosity:
An introduction, either in-person at the NF Summit, or via email to a scholarship recipient.
Your name listed on our Donor Appreciation slide and signage during the 2025 NF Summit.
Event Sponsors
NF Champion Sponsors
Alexion AstraZeneca Rare Disease
SpringWorks Therapeutics
Friend Sponsor
Colbeck
Patient Scholarship Sponsor
Ambry Genetics
B the Difference
2025 NF Summit scholarships generously supported by B The Difference
Exhibitor Sponsor
Children's National
About the Children’s Tumor Foundation
The Children’s Tumor Foundation (CTF) is the drug discovery engine for NF. By bringing together patients, doctors, scientists, and pharma, we drive treatments, advance care, and deliver faster results for millions affected by neurofibromatosis or schwannomatosis. Our patient-first collaborative approach accelerates drug development and brings life-changing therapies to patients faster – driven by our mission to end NF.
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Expert Speakers
Join industry experts for insightful sessions and networking opportunities.
Career Opportunities
Discover career-changing opportunities with top companies at our event.
Exclusive Access
Register now and unlock exclusive access to workshops and keynotes
FAQS
Yes, you’ll need to fill out our registration form to gain access to the event. Please fill in the registration form to get started.
The NF Summit is the largest gathering for patients, volunteers, patient advocates, researchers, clinicians, friends, and supporters connected to NF. The atmosphere will be energetic, interactive, and enriching, with customizable agendas and access to experts. No matter what life stage you are in or where you are along your NF journey, you will find content relevant to your individual situation.
This is a family-friendly event, and children are welcome to attend. However, please note that childcare will not be provided, and some sessions may be challenging for young children to sit through. To ensure an enjoyable experience for all, we encourage adults bringing children to coordinate and take turns attending sessions as needed.
The Teen Lounge is a dynamic space designed for teens living with NF (and their teenage siblings)! This isn’t childcare—it’s a place to connect, have fun, and learn alongside peers who get it. We'll have engaging activities and interactive discussions to create a welcoming community where you can relax, share experiences and gain new insights about NF in a supportive, empowering environment. Come hang out, make friends, and leave with memories (and knowledge) that last beyond the Summit!
The dress code for the NF Summit is fairly casual and CTF attire is always appropriate; however, although the temperatures outdoors will be quite warm at this time of year, please bring some light layers because hotel conference rooms tend to be cold. Mostly, we want you to be comfortable.
Speakers will discuss topics relevant to all types of neurofibromatosis and schwannomatosis. A complete agenda is in progress and will be provided here in the coming weeks. In the meantime, please view the 2024 NF Summit playlist for an idea of the types of information presented
No, the NF Summit will in an in-person meeting only in 2025. The presentations will be posted online following the event.
To complete your payment, please navigate back to the registration form and enter the e-mail address you've registered with to be prompted to complete your payment. If you have any questions, please contact us at NFSummit@ctf.org
We understand that plans can change, however, registration fees are non-refundable. If this creates a hardship please contact us at NFSummit@ctf.org