Each year, NF Upper Midwest joins the NF Network in advocacy efforts by lobbying in Washington, DC. 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, NF research has been funded by congress through the CDMRP. Through the yearly appropriations process, anywhere between $8 million and $25 million has been dedicated to NF research through the CDMRP. This research has resulted in clinic trials for some of the most significant complications with NF.
In February of each year, NF UM board members set out to Washington, DC and meet at the offices of leaders of Minnesota, North and South Dakota. During these visits on the hill, NF UM board members raise awareness of NF by explaining the disorder and it's impact, along with sharing the highlights of this incredibly important research. NF UM also requests that these leaders support their district by signing a letter of support for funding through the CDMRP. Since NF UM began lobbying in 2011, we have steadily increased the number of congress signatures from zero to four.
NF Upper Midwest also supports local advocacy efforts by gathering personal stories of NF impact on families and individuals and passing those along with other communications to congress throughout the year.
Are you interested in advocacy and talking to your district leaders? Would you like to share your story?
If so, we would love to help! Please contact us at email@example.com
Advocacy and CDMRP Research Links