Advocacy has become one of the most important ongoing programs of our organization, and our efforts have paid off.
Since joining other NF organizations from around the country in 1996 to create the National NF Network Advocacy Program we have worked closely with members of the House and Senate to secure over $500 million for NF not only at the National Institutes of Health (NIH) but also through the Department of Defense Congressionally Directed Medical Research Program (CDMRP)
Karen Peluso, Executive Director of NFNE, has presented testimony before the House Appropriations Subcommittee on Labor, Health and Human Services and Education as well as the Senate and House Appropriations Subcommittees on Defense.
Research advances made by the DOD program since 1996 have been dramatic. But, in recent years the program’s funding has declined from a peak of $25 million in FY05 to $15 million in FY2019.
Note: funding from these programs goes directly to researchers. NFNE receives no government support.
This is a critical time for NF research because clinical trials 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.
Please take advantage of our Advocacy Toolkit. The success we have achieved so far is testimony to the partnership between grass roots advocacy groups, legislators and the scientific community.