On February 23–24, Over 100 passionate advocates from across the country gathered in Washington, D.C., united by one shared mission: advancing research and hope for the neurofibromatosis (NF) community.

The energy was undeniable as advocates filled the halls of Congress, meeting with lawmakers and staff to champion continued federal funding for the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP) and research at the National Institutes of Health (NIH). Each conversation carried the weight of lived experience—and the urgency of a community that refuses to be overlooked.

For 30 years, the NF Network Advocacy Program has ensured that NF voices are heard on Capitol Hill. Thanks to the dedication of our advocates and supporters, more than $400 million has been secured for NF research—fueling discoveries, advancing treatments, and moving us closer to a cure.

Bringing together nearly every state in the nation was a powerful reminder: when we stand together, we are impossible to ignore.

To every advocate, supporter, and partner—thank you. Your commitment strengthens our message and amplifies our impact. Because of you, lawmakers are learning, listening, and acting. And because of you, progress continues.

We are also deeply grateful to our generous sponsors—Alexion Pharmaceuticals US, NF Northeast, NF Midwest, NF North Central, Texas Neurofibromatosis Foundation, NF Arizona, NF Central Plains, Neurofibromatosis Michigan, and Penny’s Flight. Your partnership helped make this event a success, and your support fuels our ongoing work.

Together, we will keep pushing forward—accelerating research, expanding treatment options, and driving toward a future without NF.

If you would like to know more about our advocacy program, please visit here.

Find upcoming NF Events            Donate to NF          Stay iNFormed