Make Your Story Heard on Capitol Hill

Author: NF Network

Published On: 1/8/2026

Each year in February, advocates participating in the NF Network Advocacy Program meet with hundreds of offices to educate Congress on the importance of continued federal funding for NF research. These advocates speak out, speak with, and speak for our NF community, and we need your help! 

We are celebrating 30 years of Advocacy for neurofibromatosis! As we prepare for our annual meetings, we want to share your story with your representatives. As constituents in your representatives’ districts, it is your voice that inspires your members of Congress to sign on in support of these important federal research funds. Your story can be as detailed and as personal as you’d like to share.

The NF Network will identify your representatives by your address, so please be sure to include your address and contact information at the bottom of your letter. To submit your story, please email us here.

Together, we are making an impact on the future of NF research! Since 1996, the NF Network has played a vital role in securing over $400M in federal research funds for neurofibromatosis. Help us continue to make a difference and share your story with us! We thank you for joining us as one voice for the NF community!

To learn more about the NF Network Advocacy Program, click here.  

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