Thank you for helping us support the NF Research Program. You may use the letter below and fill in the name of your Representative. We ask that you email the letters to your Representative – don’t use regular mail. Make sure to include your name and address on the email at the bottom of the letter.
Please do it today. If NF families won’t advocate for NF how can we expect others to?
Follow the steps below:
2.) Their email addresses are provided and you can copy and paste the letter below and fill in the blanks, or write your own personal letter.
3.) Email your letters, including your name and address.
Adding a personal touch to your letter is always meaningful.
The Honorable ____________
__________ House Office Building
Washington, DC 20515
Dear Congressman/or Senator ____________:
As someone closely touched by Neurofibromatosis (NF), I write to ask your support of two NF research programs. The first is the Army’s NF Research Program (NFRP) in the Defense Appropriations bill. The second is for inclusion of report language on NF research at the National Institutes of Health in the Labor-HHS-Education Appropriations bill.
NF involves the uncontrolled growth of tumors along the nervous system, which can result in terrible disfigurement, deformity, deafness, blindness, brain tumors, cancer and death. NF is the most common neurological disorder caused by a single gene and is more common than muscular dystrophy and cystic fibrosis combined. However, because of NF’s close connection to many common diseases and disorders, such as cancer, learning disabilities, heart disease, memory loss, and brain tumors, research on NF stands to benefit 175 million Americans in this generation alone.
The Department of Defense fills a special role by providing peer-reviewed funding for innovative, high-risk/high-reward medical research through the Congressionally Directed Medical Research Programs (CDMRP). The NFRP is a well-executed and efficient program within the CDMRP and addresses areas of great clinical need directly affecting the health of the war fighter. NF is a complicated condition closely connected to many common diseases and disorders that can lead to unmanageable pain, learning disabilities, cancer, orthopedic abnormalities, deafness, blindness, memory loss, and amputation. NF also involves inflammation similar to that involved in wound healing.
Recognizing NF’s importance to both the military and to the general population, Congress has given the Army’s NF Research Program strong bipartisan support. From FY96 through FY18 funding for the NFRP has amounted to over $300 million, in addition to the original $8 million appropriation in FY92. The Army’s program funds innovative, groundbreaking research which would not otherwise have been pursued, and has produced major advances in NF research, including conducting clinical trials in a nation-wide clinical trials infrastructure created by NFRP funding. Army officials administering this program have indicated that they could easily fund more applications if funding were available because of the high quality of the research applications received.
The modest investment in NF research has already resulted in major breakthroughs. In addition to providing a clear military benefit, the DOD’s Neurofibromatosis Research Program also provides hope for the 100,000 Americans who suffer from NF, as well as over 175 million Americans who suffer from NF’s related diseases and disorders. We must continue to invest in research and build on the successes of this program if we are to continue to advance towards treatments and cures for NF and the numerous diseases associated with it.