NF advocates throughout the country work every year to lobby politicians in their home states and Washington DC to push for continued funding of NF research.

Making an Impact on the National and Local Level

NF Upper Midwest works with other NF organizations on advocacy efforts by lobbying in Washington, DC and at the local level. Our goal in these efforts is to secure federally funded research through the Congressionally Directed Medical Research Programs (CDMRP) from the Department of Defense and the National Institutes of Health (NIH).

Since 1996, over $300 million has been appropriated to the Department of Defense’s Neurofibromatosis Research Program.

Congressionally Directed Medical Research Programs

NF research is funded by congress through the CDMRP. Through the yearly appropriations process, anywhere between $8 million and $25 million has been dedicated to NF research. This ongoing research has resulted in clinic trials for some of the most significant complications with NF.

Every year, NF Upper Midwest asks its leaders to support their district by signing a letter of support for NF funding through the CDMRP. Since we began lobbying in 2011, we have steadily increased the number of congressional signatures from zero to four.