Celebrating 35 Years

Another $15 Million for NF Research

This past February, NF Midwest brought volunteers to Washington DC to once again advocate for federal dollars for neurofibromatosis type 1, type 2, and schwannomatosis (NF) research. Thanks to your donations, NF Midwest has been advocating for continued research through the National Institutes of Health (NIH) and the Congressionally Directed Medical Research Program (CDMRP) for 22 years. During that time over $600 million has gone to NF research through a combination of those two programs.

This year $30 million has been allocated to NF research through the CDMRP. We know this number sounds larger. This is because last February (due to Congressional delays….big sigh) we found ourselves pushing for the completion of Fiscal Year 2018 funding while also fighting for Fiscal Year 2019 funding. Earlier this year funding of $15 million for NF research was included in the FY18 bill and recently Congress included $15 million in the FY2019 budget.


But guess what?

We’re already starting that process all over again for Fiscal Year 2020! Yes, we know that seems so far away…but it’s never too early (or too often) to push for NF research!

This February, NF Midwest and community volunteers will once again head to Washington, DC to fight for funding through the CDMRP and language in support of research through the NIH.

We need you to support these efforts. Please, create letters sharing your personal story for us to hand deliver to your representatives in Congress (one for each Senator and one for your Representative – so 3 letters). Learn more about writing, including a sample letter here. Please email your letters to  or mail them to NF Midwest, 473 Dunham Rd, Suite 3, St. Charles, IL 60174.

More urgent right now are donations to support these efforts. Please, consider making a donation at nfmidwest.org/donate and choosing for your donations to go to Research including grants and advocacy for federal research dollars.

Our goal is $12,000 to fund all advocacy efforts for the year.

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