Send us your personal NF story, we'll deliver to Congress

Author: Kim Bischoff
Published On: 01/28/2018

On February 12 and 13, NF advocates will be storming the halls of Congress to educate its 535 members about neurofibromatosis and ask for their support to fund vital NF research.

We need your help to get the job done!

Send us your personal NF stories and include your need for federal funding for NF research. The NF advocates on the Hill this February will take it to your congressman’s office so your voice is heard in Washington D.C.

We will need each letter to include (see sample letter here):

1. Your name and address (you do not need to know your representative’s names)
2. Brief story of how NF affects you or your loved one
3. Optional: Small picture of yourself and family
4. The following paragraph:

          Please join me and the more than 120,000 Americans living with NF and their families by continuing federal funding of NF research through the Army’s NF Research Program (NFRP) in the Department of Defense Appropriation bill and the inclusion of report language of NF research at the National Institutes of Health in the Labor, Health and Human Services, Education Appropriations bill.

Please email your NF stories to and the NF advocates will hand deliver them to your congressional offices.

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