Since 1996 NF Midwest has been funding advocacy efforts to increase federal spending on NF research. That funding now totals over $300,000,000.
NF Midwest supports research by directly funding research projects; advocating for federal research funding; and supporting clinics in their clinical trials.
To promote federally funded NF research, Neurofibromatosis Midwest has participated in national advocacy efforts since in 1996. Working closely with members of the House and Senate we seek increased funding for research not only at the National Institutes of Health (NIH) but also through the Department of Defense (DOD) Congressionally Directed Medical Research Program (CDMRP). Every year we join other NF advocates in Washington DC to visit representatives in the House and Senate asking for support of NF research through the NIH and the DOD. We also rally our supporters to contact Congress at various stages of the appropriations process. It is very important that neurofibromatosis supporters look for and act quickly on our requests to petition for funding.
Advocacy has become one of the most important ongoing programs of our organization, and our efforts have paid off. Research advances made by the DOD program since 1996 have been dramatic.
NF Midwest has been funding research since 1983 and provided some of the very first funding. In fact, NF Midwest helped to fund the research that discovered the location of the NF genes. We also funded Dr. Silva research on NF1 mice with learning disabilities. This research discovered a possible therapy for learning disabilities using Lovastatin and led to one of the first NF consortium clinical trials.
Since 1989 we have supported the research database at the University of Chicago which now has probably one of the longest running longitudal studies in the world, amassing useful data on those affected by NF.
More recently, we funded cognitive studies on children with NF1 at the University of Wisconsin. This research immediately provided information that is helpful to scientists AND parents. It also provided free neuropsychological testing to eligible children in our region.
We’ve also funded several NF2 research projects by well known NF2 researchers including Dr. Brad Welling at Ohio State Dr. James Gusella at Massachusetts General.
Every winter we ask for your personal stories to bring with us to Washington DC where we hand deliver them to your Senators and Congressman. Please, write one whenever you have the chance. Be sure to include a photo and send it to us via email at firstname.lastname@example.org or mail (NF Midwest, 473 Dunham, Rd, Suite 3, St. Charles, IL 60174.
The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.