SUPPORT NEUROFIBROMATOSIS RESEARCH

Rep. (insert full name)
Washington, DC

Dear Congressperson (insert last name):

As someone affected by Neurofibromatosis (NF), I am writing to ask for your support of Neurofibromatosis research through both the Department of Defense (DoD) and the National Institutes of Health (NIH). Thanks to past Congressional support, significant advances in NF research have been made over the years, and researchers are now on the threshold of a treatment and a cure for this terrible disease.

NF involves the uncontrolled growth of tumors along the nervous system, which can result in severe disfigurement, deformity, deafness, blindness, brain tumors, cancer and death. NF is the most common neurological disorder caused by a single gene, and it affects approximately 100,000 Americans. 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.

NF research also has the potential to serve military purposes since the disease is connected to nervous system impairment and war-related illnesses. Because NF manifests itself in the nervous system, the Army-supported research on NF addresses peripheral nerve regeneration after injury from hazards such as missile wounds and chemical toxins. Findings generated by research on NF could make important progress in our understanding of wound healing. The genetic mechanisms being investigated underlie not only the nervous system, but also many common cancers.

The modest investment in NF research has already resulted in major breakthroughs toward a treatment and a cure for this disease. However, I believe that we must continue to invest in research if we are to make further advances toward treatments and cures for the numerous diseases associated with NF.

I specifically ask that you show your support by 1) adding NF to your office priority list and 2) sending a letter of support to the Defense and Labor HHS appropriations subcommittees. We are specifically seeking $20 million for FY08 from DOD to continue the Army’s highly successful Neurofibromatosis Research Program (NFRP), as well as the inclusion of Report language on NF research in the FY08 Labor, Health and Human Services Appropriations bill.

I thank you for your consideration of this request and I look forward to working with you as we advance toward treatments and cures for neurofibromatosis and the numerous diseases with which NF is associated.

Sincerely,

(Your name and address)