Posted By Karissa Haberkamp | On January 6th, 2026
NF Midwest advocates will be in Washington, D.C., from February 22–24 to urge Senators and Representatives to continue supporting research for NF, including neurofibromatosis type 1, NF2-related schwannomatosis, and schwannomatosis.
We are collecting letters to hand-deliver to your members of Congress. Sharing your story helps emphasize the importance of continued NF research funding through the Congressionally Directed Medical Research Programs (CDMRP) and the National Institutes of Health (NIH).
Anyone can write a letter, whether you are directly impacted by NF or are a supportive friend, family member, teacher, or ally. Your voice matters. To make it easy, we have created a simple form you can fill out that will help write your letter.
If you prefer to write your own letter, you are welcome to do that as well. Email it to info@nfmidwest.org and be sure to include your home address and the names of your Senators and Representatives. If you need guidance, we have an example letter you can use.
Not sure who your Senators or Representatives are? No problem. You can find your representative here. If you’re still unsure, just email your letter to us and we will make sure it gets delivered to the right person.
For any questions, email Diana. Let’s work together to protect critical funding for NF research.
Letters are Due by February 15, 2026!
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