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April 11-13, 2024
San Antonio, TX

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NF Summit 2024

The 2024 NF Summit will be held April 11-13, at the Hyatt Regency San Antonio Riverwalk in San Antonio, continuing its tradition as the flagship event for the NF community.

After registering, you will receive a confirmation email with a link to book your room at our special NF Summit rate of $209/night.

Registration closes April 1, 2024.

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To apply for a scholarship Click Here
Para solicitar una beca Haga clic aquí

2024 Agenda

The 2024 agenda includes a renewed focus on the role of patients and care advocates in advancing NF research, not only as research subjects but as representatives of the NF community. Aligning with CTF’s strategic plan and focus on bringing new treatments to market and the launch of CTF Engage, CTF’s patient representative program, attendees will learn how patients can shape the future of NF research.

Be sure to join us on Friday evening at The Alamo!

Thursday Evening - Opening Reception & Keynote


Josh Denny, MD, MS, CEO of the National Institutes of Health’s All of Us Research Program

This talk will spotlight the transformative potential of the NIH All of Us Research Program and emphasize its role in advancing precision medicine. Through a deep dive into how a large-scale initiative like All of Us can drive insights into rare diseases like neurofibromatosis, attendees will grasp the profound impact on future discoveries and personalized treatments. Drawing from experiences as a clinician, a father affected by NF, and CEO of All of Us, Dr. Denny will provide firsthand insights into the complexities of this condition and its diagnostic journey and the immense power of conducting research at such a scale. Attendees will leave with a clear understanding of the program’s national mission, the various avenues for involvement – be it contributing data as participants or leveraging the robust cloud data platform as researchers – and the collective opportunity to revolutionize rare disease understanding and treatment over time.

Friday Morning - Clinical Care in NF1, NF2-SWN and SWN

  • NF1 Over the Lifespan: When should I worry about cutaneous neurofibromas? Do Cafe Au Lait Spots ever stop appearing? Why does my doctor say we don’t need to worry about Optic Gliomas in my teenager with NF1? Hear answers to these questions and more from NF Summit 2024 Co-Chairs Dr. Devorah Segal and Dr. Manikum Moodley.
  • NF and School: How to advocate & what to know. Living with a rare disease can make school at any level, including college, more complicated. Missed school, hearing loss, learning differences, bullying, and more; hear from a panel of experts on advocating for what you or your child needs. 
  • NF Variant Curation Expert Panel (VCEP): Types of genetic variants and what they mean, what information is used by labs when they do your genetic test and why it’s important. 
  • NF2-SWN: Hearing & Communication Technology: Practical tips for navigating a hearing world with hearing loss
  • Hearing Preservation in NF2-SWN: Medical & surgical approaches to preserving hearing.
  • Vestibular Rehab – Vestibular rehabilitation therapy (VRT) is a specialized form of therapy intended to alleviate problems caused by vestibular disorders, primarily vertigo and dizziness, gaze instability, and/or imbalance and falls. Hear from two physical therapists who work with NF-SWN patients in their daily practice. 

Friday Afternoon - Quality of Life, Self-Advocacy, and Empowerment

  • Family Planning Decisions: There is no one right way to grow your family. Hear from a Genetic Counselor about the many approaches you could consider and ask your questions!
  • Treatments for Cutaneous Neurofibromas: Where We Are Now and Where We Are Going
  • Living Rare: Moderated by Krista Comfort, an adult living with NF1, hear from a panel of experts on choosing health insurance, laws that protect you at work, talking with your employer about NF, and more!
  • How We Study Pain in Neurofibromatosis and Schwannomatosis with Dr. Scott Plotkin: Hear how pain in NF is studied and about current clinical trials looking at how we treat pain in Schwannomatosis. 
  • Empowerment: How can you make an impact in your community for NF? Hear from experts in development and advocacy!

Friday Evening at the Alamo!

Just a 2-minute walk from the Hyatt, The Alamo was established in 1718 as Mission San Antonio de Valero; the former mission, now known as the Alamo, has been a crossroads of history. Having existed under five flags of independent nations and served as a garrison for five different armies, the Alamo has a rich history and a heritage to inspire.

Join us for heavy appetizers and drinks and a chance to explore this beautiful historic site while you connect with the NF community.

Saturday - Keynote

Amit Ghose was born with Neurofibromatosis Type 1, a condition that sets him apart visually. Having faced years of bullying, Amit is now dedicated to supporting, guiding, and inspiring new generations to embrace kindness. He shares insights on building confidence, navigating obstacles, and overcoming challenges.

With an audience exceeding 80 thousand on TikTok, Amit has been featured in Unilad, Truly, Snapchat – Unfiltered, New York Post, Yahoo, and various other media outlets.

Join us to hear from Amit about his personal journey of growing up with NF1 and coming to terms with the condition. Amit will delve into how he learned to embrace his true self and allow his personality to shine, opening the path to increased self-confidence.

A man with a beard posing for a photo.

View Detailed Agenda

About the NF Summit

The Children’s Tumor Foundation’s annual patient and family conference, the NF Summit, brings together NF patients and families, volunteers, event organizers, researchers, clinicians, patient advocates, friends, and supporters. all who have a connection to neurofibromatosis or schwannomatosis. Whether you come for education, empowerment, networking, or as a way to connect with others on a similar journey, you will leave with a renewed understanding and a refreshed motivation to End NF.

No matter your life stage or where you are along your NF journey, you will find content relevant to your individual situation.

Want to Learn More?

Click the button below for the 2024 NF Summit frequently asked questions.


2024 Planning Committee

The 2024 NF Summit planning committee includes medical Co-Chairs Devorah Segal, MD, PhD, pediatric neuro-oncologist at NYU Langone Medical Center, and Manikum Moodley, MD, a pediatric neurologist at Dell Children’s NF Center. The team includes Jessica Contreras, NF2-SWN patient and Volunteer Leadership Council (VLC) member, and Krista Comfort, NF1 patient and VLC member, who will bring the invaluable expertise of adults living with NF.

NF Summit Video


I was really nervous & excited coming to this summit as it was my first one. It did not disappoint. I was empowered & motivated to make a difference for myself & others with NF. I found the summit to be very informative. There are new & different possibilities now & I was able to make friendships that will last a lifetime. I finally feel like I can get the care I will need going forward. Thank you for providing this opportunity & all your hard work and dedication did not go unnoticed.

First-time attendee.

The sessions were engaging and on-point - a nice blend of education/information and human experience/storytelling. The speakers were equally excellent and connected well with the audience.

Return Attendee

I learned so much at this event that I thought I had a good handle on. Now, I feel more prepared to care for my son. Educate his medical teams and educators but also feel less helpless.

Return Attendee

NF Summit Presentations

View these educational sessions and panels from past NF Summit and NF Forum conferences covering NF diagnosis, management, and research, as well as helpful information about fundraising and storytelling to help spread NF awareness.

Please note links will open the Children's Tumor Foundation YouTube channel in a new tab to view the video.

NF Summit Playlists

NF Summit 2023

NF Summit 2022

A woman is talking on a blue screen with the words children's virtual forum.

NF Forum 2021

The impact of nf on relationships, learning and school.

NF Forum 2020

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