In an important development for supporters of neurofibromatosis research, the House Appropriations Committee reported a bill yesterday that would restore funding for the Nuerofibromatosis Research Program to the FY2005 level of $25 million. The full House will now deliberate on the bill. Both the House and Senate must pass this bill, and it must be signed by the President, before this funding level is final.
“The Appropriations Committee properly assessed the progress that we have made in NF research,” said John Risner, president of the Children’s Tumor Foundation. “They recognized that further funding will lead to vital breakthroughs toward treatments and a cure for NF. We applaud the diligence and vigor the Committee has shown in this critical first step.”
NF is a common yet under-recognized disorder that, in its most common form, affects one in 3,000 individuals and causes tumors to grow on nerves throughout the body. NF can lead to deafness, blindness, learning disabilities and certain forms of cancer. Clinical trials for therapies of both NF1 and NF2 have recently commenced and there is hope among the NF community that treatments to quell the tide of tumor growth may be on the horizon.
The funds are part of the Congressionally Directed Medical Research Program in Neurofibromatosis (CDMRP-NFRP), a program that was established in 1996 with a mission to promote research directed toward the understanding, diagnosis, and treatment of neurofibromatosis, as well as enhance the quality of life for persons with the disorder. Since its inception the program has committed over $200 million to NF research and has been instrumental in the discovery of the genes that cause NF1 and NF2.
Please visit our advocacy page at http://www.ctf.org/How-You-Can-Help/advocacy.html for a history of the program and how you can help support this vital research funding.
