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.

Aubrey Rothrock has extensive experience in managing all aspects of major government relations initiatives for domestic and multi-national corporations and tax exempt organizations. His practice includes monitoring and analyzing legislative and regulatory developments; drafting federal legislation, amendments and congressional testimony; and working directly with Members of Congress, their staffs, and the Administration to enact or oppose pending legislation. Mr. Rothrock has been actively involved in the formation of numerous private-sector coalitions to reduce federal tax burdens and mitigate the impact of regulations in the areas of health benefits, financial services, environment, transportation and trade.

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"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.

Elizabeth O’Brien (“Beth”) is Co-Founder and CEO of CureNFwithJack (CNFWJ), a nonprofit corporation whose mission is to advance awareness and find a cure or effective treatment for NF through the funding of research. CNFWJ has raised millions of dollars for NF research on its own behalf and on behalf of CTF. CNFWJ’s namesake is Beth’s son, who lives with NF1. It is Beth’s passion and purpose to end NF, and she regularly speaks in public to promote awareness for and education about this devastating neurogenetic disorder. Beth is also an experienced attorney and currently advises clients concerning actual or potential litigation in Georgia and elsewhere in the United States. Prior to working with a small practice in the Atlanta area, Beth spent more than eight years as a litigator in Washington D.C. at Williams & Connolly LLP, one of the nation’s premier litigation firms. Before joining Williams & Connolly, Beth served as law clerk to a federal district court judge and is currently a member of the Supreme Court of the United States, the Eleventh Circuit Court of Appeals, numerous other federal and state courts, and the Georgia and District of Columbia bars. She is a graduate of the University of Michigan and University of Michigan School of Law and is currently engaged in executive studies in Nonprofit Leadership at Harvard University's Kennedy School of Government. Beth is an active member of her Atlanta area community, where she resides with her husband and CNFWJ Co-Founder, Jake Burke, her three children, and one adorable dog.

“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.”

Renie Moss lives in Vestavia Hills, AL with her husband of 24 years, Philip Sr. and two children, Philip Jr. (19) and Helen (17). Philip Jr. was diagnosed with neurofibromatosis type 1 in 2011 when a tumor was discovered in his neck. Following her son’s diagnosis, Helen and Philip Sr. were both diagnosed in 2013. With three family members, all diagnosed with the same NF1 genetic variant, only Philip Jr. is acutely affected with an inoperable and invasive plexiform tumor that threatens his airway and other vital functions. He is currently enrolled in a clinical trial through the National Cancer Institute and after ten years, his tumor remains stable and is 60% smaller. As of spring 2020, that drug became the first FDA approved treatment for pediatric plexiform tumors associated with NF1. Renie is an avid advocate for the neurofibromatosis community and the scientific and medical leaders dedicated to finding effective treatments for neurofibromatosis. She is a former chair of the Children’s Tumor Foundation (CTF) Volunteer Leadership Council and served as patient liaison to the Synodos NF1 Research Consortium. She chaired the Alabama NF Walk for several years and other fundraising events, raising over $200,000 for clinical research and patient support. Most recently, she completed the 2024 Chicago Marathon, raising over $10,000 as an NF Endurance runner. She is also a patient representative on the Response Evaluation in Neurofibromatosis and Schwannomatosis International Collaboration also known as REINS, helping researchers develop standardized response criteria for determining treatment responses in neurofibromatosis. Local to Alabama, Renie provides patient and caregiver perspective by serving on the University of Alabama at Birmingham (UAB) NF Clinic Patient Advisory Board and the UAB Genetic Counseling Program’s Advisory Board and assists in the coordination the annual UAB NF Symposium and Family Day, connecting with newly diagnosed patients and their families to provide support and encouragement. Professionally, Renie serves as the Operations Administrator for the Gregory Fleming James Cystic Fibrosis Research Center at the University of Alabama at Birmingham. She holds an undergraduate degree in English and masters degrees in education and public health from University of Alabama at Birmingham. In her spare time, Renie enjoys spending time with family, visiting Philip Jr. at Mississippi State University (when he allows it!), gardening, and baking with daughter Helen.

Lara Urubshurow Mukabenov lives in Yardley, PA with her son and daughter while also caring for her mother as part of their multigenerational household. Raised in central New Jersey, Lara remains deeply involved in the Philadelphia and New Jersey Neurofibromatosis (NF) communities. Her advocacy began when her daughter, Altana, was diagnosed with NF1 at just one month old. At age two, Altana was found to have her first, and largest, plexiform neurofibroma (PN), which encases her airway and heart. After participating in four clinical trials, including the one that led to the first FDA-approved treatment for PN, Altana is now off treatment and thriving. She recently completed her sophomore year of university, where she is pursuing a BS in Psychology. Lara's work with the Children's Tumor Foundation (CTF) began soon after Altana’s diagnosis. She served as Walk Chair of the New Jersey Shine A Light NF Walk from 2014 to 2022, following more than eight years as a Charter Committee Member for the Philadelphia Shine A Light NF Walk. Lara has also contributed to several CTF task forces, participated in the REiNS Lay Abstract Subgroup, worked with the NF Family Association at the Children’s Hospital of Philadelphia on various projects and currently serves as co-race director for the New Jersey Cupid’s Undie Run. Professionally, Lara is Director of Operations at Nomad Framing, a New Jersey-based construction framing contractor. Having grown up around construction, she came to work for family in the business and held many roles over the years, she celebrated her 31st year with the company in 2025. She also occasionally lends her graphic design skills to its affiliated travel company, Nomad Expeditions—an outlet that draws on her previous career path and nurtures her lifelong love of creativity.

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.

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.

Dr. Robert A. Avery is a member of the Division of Ophthalmology at The Children’s Hospital of Philadelphia.  Dr. Robert Avery is also an assistant Professor of Ophthalmology and Neurology at the University of Pennsylvania’s Perelman School of Medicine.    

Dr. Avery completed his pediatrics residency training at the A.I. duPont Hospital for Children.  He then completed both his pediatric neurology residency and neuro-ophthalmology fellowship at the Children’s Hospital of Philadelphia/University of Pennsylvania.   Dr. Avery also received his Master of Science in Clinical Epidemiology from the University of Pennsylvania.  Dr. Avery started his career as an attending pediatric neuro-ophthalmologist at Children’s National Medical Center and assistant professor of Neurology at the George Washington University School of Medicine in Washington, DC.  In 2015, Dr. Avery returned to Philadelphia and joined the Division of Ophthalmology at The Children’s Hospital of Philadelphia.

Dr. Avery’s unique clinical and research expertise enables him to perform cutting-edge research involving multiple disciplines, including neuro-oncology, radiology, ophthalmic imaging, neurosurgery, neurology and ophthalmology.  His primary research interest investigates advanced ocular and brain imaging methods for monitoring and treating children with brain tumors affecting their vision.  He is the principal investigator of two grants from the National Cancer Institute, one grant from the National Eye Institute, and one grant from the US Department of Defense that investigate visual outcomes in low grade gliomas known as “optic pathway gliomas (OPGs)”.  He is passionate about the ophthalmic care of children with Neurofibromatosis type 1 (NF1). He is the lead ophthalmologist for a phase-2 and three different phase-3 clinical trials testing treatments for children with brain tumors causing blindness.  He is also part of the Gilbert Family Foundation’s “Visual Restoration Initiative”, a multi-disciplinary team engaged to develop first-in-kind therapies to restore sight in children with Neurofibromatosis type 1.

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.

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.

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.

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 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.

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.

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.

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.

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.

In 2019 our daughter was diagnosed with neurofibromatosis (NF1). Not too long after, it was confirmed that my wife herself also has NF1. In 2024 our family was faced with its first tough decision in regard to medical treatment for our daughter. I personally had a moral dilemma, and the forced decision ignited a new emotion I hadn't experienced with NF, anger. Knowing that the anger was going to rip us and our family apart is what led us to finding our voice and raising awareness in our community. It started with 50 Miles in May in 2024. That month we quickly realized that the way to raise donations and awareness was going to be to get out of our bubble and engage our community and legislators. We reached out to multiple people from CTF so they could connect us with other advocates in our area. Connie Brisson Sorman was paramount as far as encouraging and supporting these efforts and by the end of May 2024, we had raised $3211 and passed our first House resolution recognizing May 17th as World Neurofibromatosis Awareness Day. Some of those 50 miles were ran around my workplace, a warehouse that employed 70 to 100 people at that time. The business has a practice of displaying a picture of your choice on several big screen monitors for seven days close to your Birthday. I chose a photo of my family holding the END NF flag in a famous location in Philadelphia. As I was running my 50 miles on my lunch break, that photo was displayed to all of my coworkers. The word began to spread, and it eventually led to the owner of the company making a $3000 donation to my family for our NF Walk Team, Jade's Way Warriors. We had also participated in our first NF Walk that September, which led to us solidifying some solid connections with other people that were living with NF as well as the Co Walk Director, Lauren Blair. At that same walk, I recall seeing the Event Director for Philly Cupid's for the first time as well. We didn't know Marie Lazam - Basslet at the time or how important she would be to our family, but I recall being drawn to her magnetic energy. We later connected with another powerhouse, Caroline Moulsdale. She is responsible with introducing us to Marie, a union that ultimately led us to volunteering at the Cupid's Undie Run in Philadelphia in February 2025 and now joining the planning committee for 2026. And the connection with Lauren Blair led us to joining the Planning Committee for the 2025 Philadelphia Shine A Light Walk. After Cupid's we went into preparation for World Neurofibromatosis Awareness Month, 2025. Behind the scenes we continued connecting with our legislators, local businesses and community and were invited into The Bucks Mont Collaborative, the biggest group of Non-Profit networkers in two large local counties. We also worked diligently to land a meeting with a local Senator that boasts a HealthCare background. Accompanied once again by our friend and partner, Marie Lazam - Basslet, we went into a meeting with our local State Rep and State Senator to set into motion the lighting of The Lt. Governors Balcony at the PA State Capitol in honor of World Neurofibromatosis Awareness Day. The other pieces we lined up for May were 4 Charity events we designed to raise maximum awareness and build up to the lighting of the State Capitol. It was all a success as we went beyond our donation goal of $3300 by raising over $5000 for The Children's Tumor Foundation in May 2025. It was the culmination of 12 months of hard work and ultimately an awareness campaign that we ourselves have a difficult time remembering all of the highs and lows of. In 12 months, we joined the Shine A Walk and Cupid's Planning Committee, were invited into the 2025 Online Poker Tournament Committee, got educational materials about NF into a local Elementary School to assist with IEP's, inspired one teacher to write college essay about NF and another to join a clinical research trial at Children's Hospital of Philadelphia, got two House resolutions passed, joined a large Non-Profit Networking Planning Committee, ran over 80 Miles, raised over $11,000.00, were nominated for a Volunteer of The Year award and asked to speak to the amazing NF Community at This Summitt. And at the pinnacle of our work, we were recognized for our advocacy efforts in the Pa Senate Chamber and saw our House Resolution get signed as we sat in the Pa House of Representatives. None of which would have happened if not for the biggest powerhouse of them all, my beautiful wife and daughter. We hope to continue to bring the fight to NF and galvanize our most precious resource, the people living with NF. Our aim is to one day End NF once and for all.

I'm Emily Little, BSN, a dedicated nursing professional with a diverse background in bedside care and clinical education. I’ve worked across adult oncology, labor and delivery, and pediatric emergency nursing, and previously served as a clinical instructor in labor and delivery at the Johns Hopkins School of Nursing. Currently, I’m the Nursing Coordinator for the Department of Neurology at Johns Hopkins, supporting the Comprehensive Neurofibromatosis Center and serving as a liaison between patients and providers, helping bridge communication. I’m proud to have been named a Baltimore magazine 2025 Excellence in Nursing award recipient. Passionate about patient advocacy and improving care coordination, I bring empathy and experience to every interaction.

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.

Renie Moss lives in Vestavia Hills, AL with her husband of 24 years, Philip Sr. and two children, Philip Jr. (19) and Helen (17). Philip Jr. was diagnosed with neurofibromatosis type 1 in 2011 when a tumor was discovered in his neck. Following her son’s diagnosis, Helen and Philip Sr. were both diagnosed in 2013. With three family members, all diagnosed with the same NF1 genetic variant, only Philip Jr. is acutely affected with an inoperable and invasive plexiform tumor that threatens his airway and other vital functions. He is currently enrolled in a clinical trial through the National Cancer Institute and after ten years, his tumor remains stable and is 60% smaller. As of spring 2020, that drug became the first FDA approved treatment for pediatric plexiform tumors associated with NF1. Renie is an avid advocate for the neurofibromatosis community and the scientific and medical leaders dedicated to finding effective treatments for neurofibromatosis. She is a former chair of the Children’s Tumor Foundation (CTF) Volunteer Leadership Council and served as patient liaison to the Synodos NF1 Research Consortium. She chaired the Alabama NF Walk for several years and other fundraising events, raising over $200,000 for clinical research and patient support. Most recently, she completed the 2024 Chicago Marathon, raising over $10,000 as an NF Endurance runner. She is also a patient representative on the Response Evaluation in Neurofibromatosis and Schwannomatosis International Collaboration also known as REINS, helping researchers develop standardized response criteria for determining treatment responses in neurofibromatosis. Local to Alabama, Renie provides patient and caregiver perspective by serving on the University of Alabama at Birmingham (UAB) NF Clinic Patient Advisory Board and the UAB Genetic Counseling Program’s Advisory Board and assists in the coordination the annual UAB NF Symposium and Family Day, connecting with newly diagnosed patients and their families to provide support and encouragement. Professionally, Renie serves as the Operations Administrator for the Gregory Fleming James Cystic Fibrosis Research Center at the University of Alabama at Birmingham. She holds an undergraduate degree in English and masters degrees in education and public health from University of Alabama at Birmingham. In her spare time, Renie enjoys spending time with family, visiting Philip Jr. at Mississippi State University (when he allows it!), gardening, and baking with daughter Helen.

Lara Urubshurow Mukabenov lives in Yardley, PA with her son and daughter while also caring for her mother as part of their multigenerational household. Raised in central New Jersey, Lara remains deeply involved in the Philadelphia and New Jersey Neurofibromatosis (NF) communities. Her advocacy began when her daughter, Altana, was diagnosed with NF1 at just one month old. At age two, Altana was found to have her first, and largest, plexiform neurofibroma (PN), which encases her airway and heart. After participating in four clinical trials, including the one that led to the first FDA-approved treatment for PN, Altana is now off treatment and thriving. She recently completed her sophomore year of university, where she is pursuing a BS in Psychology. Lara's work with the Children's Tumor Foundation (CTF) began soon after Altana’s diagnosis. She served as Walk Chair of the New Jersey Shine A Light NF Walk from 2014 to 2022, following more than eight years as a Charter Committee Member for the Philadelphia Shine A Light NF Walk. Lara has also contributed to several CTF task forces, participated in the REiNS Lay Abstract Subgroup, worked with the NF Family Association at the Children’s Hospital of Philadelphia on various projects and currently serves as co-race director for the New Jersey Cupid’s Undie Run. Professionally, Lara is Director of Operations at Nomad Framing, a New Jersey-based construction framing contractor. Having grown up around construction, she came to work for family in the business and held many roles over the years, she celebrated her 31st year with the company in 2025. She also occasionally lends her graphic design skills to its affiliated travel company, Nomad Expeditions—an outlet that draws on her previous career path and nurtures her lifelong love of creativity.

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.

“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.”

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.

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