Call to Action!
April 26 2011
Posted in Advocacy
Congressman Gutierrez’s office sent out a Dear Colleague letter today asking for member of Congress to sign onto two letters supporting NF research. The first is supporting $16 million for the Army’s NF Research Program in the Fiscal Year 2012 Department of Defense Appropriations bill and the other is asking for NF specific report language to be included in the Fiscal Year 2012 Labor, Health and Human Services, Education Appropriations bill. Please contact your Congressman and have them contact Nicole Dinis in Congressman Gutierrez’s office at .(JavaScript must be enabled to view this email address) if they would like to sign onto these letters. The deadline to sign the letters is Tuesday May 10th. To find your congressioal representative, click here.
The following is a sample letter you can send to your representative:
The Honorable _______________________________________________
_________________________________________ House Office Building
Washington, DC 20515
Dear Congressman __________________________________________:
As someone closely touched by Neurofibromatosis (NF), I write to ask that you add your name to two letters currently being circulated seeking support for NF research in Fiscal Year 2012. The first letter requests $16 million in funding for the Army’s NF Research Program (NFRP) in the FY2012 Defense Appropriations bill, the same amount that was included for the NFRP in FY2011.The second letter requests inclusion of report language on NF research at the National Institutes of Health in the FY2012 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 FY11 funding for the NFRP has amounted to $230.05 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. We respectfully request that you contact Nicole Dinis (.(JavaScript must be enabled to view this email address)) in Congressman Gutierrez’s office by May 10th to add your name to these letters.
Sincerely,
[First and last name]
[Address]
