Advocacy Action - Help Make NF Research Happen

Help NF research happen, encourage government funding for research directed toward the understanding, diagnosis, and treatment of NF1, NF2 and Schwannomatosis to enhance the quality of life for persons with those diseases.

Voting Date Passed

CDMRP: DOD - Vision:

Decrease the clinical impact of neurofibromatosis

CDMRP: DOD - Mission:

Promote research directed toward the understanding, diagnosis, and treatment of NF1, NF2 and Schwannomatosis to enhance the quality of life for persons with those diseases.

About NF:

Neurofibromatosis (NF) includes three distinct genetic disorders of the nervous system; NF1, NF2 and Schwannomatosis. These disorders usually result in tumors involving nerves anywhere in the body; however, non-nervous tissue such as bone and skin can also be affected. Together, these three genetic disorders affect more than 100,000 Americans of both genders and all ethnic groups. NF1, NF2 and Schwannomatosis are usually inherited as autosomal dominant disorders. Therefore, a parent with NF has a 50 percent chance of passing on the disorder to his or her child. However, 30 percent to 50 percent of NF1, NF2 and Schwannomatosis cases arise as a result of a spontaneous genetic change. Tumors that develop in individuals with NF can cause disfigurement, deafness, blindness, bone deformation, learning disabilities, and in some cases death. The tumors that appear in NF patients can vary significantly, even among affected individuals in the same family. Surgical intervention can provide palliative relief; however, at this time there is no cure.

Advocacy Action

As someone closely touched by Neurofibromatosis (NF), I write to request that you add your name to two Dear Colleague letters currently being circulated by Congressman Luis Gutierrez (D-IL). These letters are seeking support for NF research in Fiscal Year 2014. The first letter requests level funding of $15 million for the Army's NF Research Program (NFRP) in the FY2014 Defense Appropriations bill, one of the Congressionally Directed Medical Research Programs (CDMRP). The second letter requests inclusion of report language on NF research at the National Institutes of Health in the FY2014 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, 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. 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.

To add your name to one or both of these letters please contact Anthony Espinosa at Anthony.Espinosa@mail.house.gov or (202)225-8203.

Thank you, X________________