Keynote speaker will be announced soon - check back for updates!

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! 

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.

More information coming soon!

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.

 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.

Get equipped with the tools needed to make a powerful impact on our mission to End NF! More information coming soon!

Join Kate Kelts, CTF's NF Nurse, to learn about clinical research and how you can get involved now or in the future.

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.

Description coming soon!

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.

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.

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.

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!

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.

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!

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!

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!

Meet in Calvert to race through the historical Omni Shoreham Hotel and find hidden clues and win prizes!

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!

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. 

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.

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! 

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. 

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

More information coming soon. 

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.

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.

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.

Join us to celebrate the work NF community members just like you have accomplished this year. We are stronger together!

NF Summit guests are invited to join NF Conference attendees for a relaxed walking reception. Network and connect with NF researchers and clinicians.