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 NF Network Advocacy Program we have worked closely with members of the House and Senate to secure over $600 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.
We also circulate Dear Colleague Letters within the House and Senate requesting sign-ons to show support of funding for NF research.
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. Federal funding of NF research is always at risk, and as advocates we must let our representatives in Congress know how important it is to keep funding NF.
Please help by contacting your Congressman and Senators to enlist their help. Here is a sample letter for you to use.
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.
