Creating leaders, advancing research, and bringing new voices to the forefront of advocacy.
In addition to NF’s clinical impacts, young people with NF or schwannomatosis are faced with the common and often elevated challenges of young adulthood. Yet, resources for this group are virtually nonexistent.
We created the NF Young Adult Leadership Program in collaboration wit The Littlest Tumor Foundation and Texas NF to help NF youth develop critical leadership skills, advocate for NF solutions, educate Congress, and advance NF research.
This five-day program includes workshops with leadership experts and mentors, meetings with Congressional leaders in DC, and two briefings – one in the House and one in the Senate. Young leaders will break-up to visit to all 435 Congressional offices and 100 Senate offices.
The NF Young Adult Leadership Program is an opportunity for NF-affected young adults to learn effective advocacy skills and speak directly to policymakers about NF. The 5-day program is the first of its kind, allowing young adults to make a difference in the NF community.
Program priorities are to create leaders, advance research, and bring new voices to the forefront of advocacy.
The 2023 program will be held January 2-6th, 2023 in Washington D.C. Scholarships are available to qualified applicants.
January 6, 2020
Day 1: Travel to DC + meet and greet
January 7, 2020
Day 2: Leadership Development Workshop
January 8, 2020
Day 3: Meet Congressional Representative + Staffers
January 9, 2020
Day 4: Hill visits
January 10, 2020
Day 5: Congressional Briefing + goodbyes and travel home
The Congressionally-Directed Medical Research Program (CDMRP) fosters groundbreaking biomedical research and supports the next generation of research scientists. Its funding focuses on high-impact NF research projects, especially those that fill identified research gaps. NF research advances have positive implications for the NF community in addition to many people with tumors, heart disease, certain cancers, nerve damage, and chronic pain.
The CDMRP is annually and directly funded through the Department of Defense (DoD) in the Defense Appropriations Act. This funding is approved annually by members of the United States Congress. During the leadership program, participants will be paired with experienced advocates to speak with Congressional representatives and their staffers about their experiences with NF and the importance of NF research. Participants will also assist on a briefing to educate Congress about NF, and will hear from a leadership expert and other leaders in the NF community.
This program offers you the opportunity to make your voice heard at the national level, develop leadership skills and personal strengths, and help the NF community find effective treatments for NF 1, NF 2, and Schwannomatosis. If you are interested in participating, please complete this application.
The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.