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Neurofibromatosis Midwest



This is a critical time for neurofibromatosis research because clinical trials that are testing drugs to treat NF’s symptoms are now underway. We must advocate for continued support of this funding, and we ask you to contact your Congressman and Senators to enlist their help. The success we have achieved so far is testimony to the partnership between grass roots advocacy groups, legislators and the scientific community.

To promote federally funded NF research, Neurofibromatosis Midwest joined the NF Network Advocacy Partnership 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. But, due to difficult financial times the program’s funding has declined from a peak of $25 million in FY05 to $15 million in FY2014. Note: funding from these programs goes directly to researchers. NF Midwest receives no government support.

Advocacy Toolkit

Here, find the tools and information you can use to speak out for Neurofibromatosis (NF).

Remember: Your personal story about neurofibromatosis is what will inspire your elected officials to take action, so make sure it’s incorporated in all of your communications.