Advocacy
Fighting for federal funding, better policies, and a stronger voice for everyone affected by neurofibromatosis.
How You Can Advocate
You don't have to be in Washington to make a difference. Here's how you can raise your voice for the NF community.
Share Your Story
Your personal experience with NF is the most powerful advocacy tool. Share it with elected officials to put a human face on the need for research funding.
Contact Congress
Call, email, or write your senators and representative. A few minutes of your time can influence millions in research dollars.
Join Advocacy Day
Meet with lawmakers in person during our annual NF Advocacy Day on Capitol Hill. Training and materials are provided — no experience needed.
Spread the Word
Follow us on social media, share advocacy alerts with friends and family, and help grow our movement for NF research and care.
Sam Leary Advocacy Scholarship Fund
Named in honor of Samuel D. Leary — a passionate NF advocate who dedicated his life to fighting for the NF community — this scholarship ensures that financial barriers never prevent anyone from raising their voice. Recipients receive support to attend advocacy events, training programs, and Capitol Hill visits.
Advocacy FAQ
Answers to common questions about NF advocacy and how you can get involved.
NF advocacy is the organized effort to influence public policy and funding decisions that affect the neurofibromatosis community. This includes lobbying Congress for increased NIH and CDMRP research funding, working with regulatory agencies to accelerate drug approvals, and raising awareness among elected officials about the needs of NF patients and families.
There are many ways to get involved. You can write or call your congressional representatives to share your NF story, participate in our annual NF Advocacy Day on Capitol Hill, join letter-writing campaigns, or simply share educational materials with your network. Every voice matters — and personal stories are the most powerful tool we have.
The Sam Leary Advocacy Scholarship Fund honors Samuel D. Leary, a tireless NF advocate who dedicated his life to fighting for the NF community. The scholarship provides financial support to individuals and families who want to attend advocacy events and training, ensuring that cost is never a barrier to making your voice heard.
Federal funding for NF research primarily comes from two programs: the National Institutes of Health (NIH) and the Congressionally Directed Medical Research Program (CDMRP). The NF Network works year-round to protect and grow this funding by educating lawmakers about the importance of NF research and the real impact it has on patient lives.
It's easier than you think. You can find your representatives' contact information at house.gov and senate.gov. A simple phone call, email, or letter sharing how NF has affected your life can make a meaningful difference. The NF Network provides templates, talking points, and guidance to help you every step of the way.