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)
Note: funding from these programs goes directly to researchers. NFNE receives no government support.
This is a promising time for NF research because Koselugo, the first drug to treat pediatric patients with plexiform neurofibromas, has recently been approved by the FDA. More clinical trials testing drugs to treat other types of NF tumors are now underway. And, we need to keep the research going!
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.
Watch this video to see promising results from our advocacy efforts!