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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! 

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.

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.

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.

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

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

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.

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.

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!

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! 

Hear about new ways to energize your fundraising efforts and unlock the potential to raise even more. 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.

More information coming soon!

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.

More information coming soon. 

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!

By invitation only. 

This is an optional event, RSVP required. Guests will be given a walking tour of a curated selection of NF Conference posters. Light refreshments provided.

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