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Response to AndyTiedye (Original post)

Tue Apr 30, 2013, 06:35 PM

4. Neurofibromatosis research is funded in part by the DoD.

Here is a sample letter from the Children's Tumor Foundation

Please consider adding your name to the Dear Colleague letter circulated by Rep. Luis Gutierrez by contacting anthony.espinosa@mail.house.gov as soon as possible.

As someone closely touched by Neurofibromatosis (NF), I write to ask that you support the critical medical initiatives conducted within the Department of Defense Congressionally Directed Medical Research Program (CDMRP). These research programs target diseases and disorders that impact directly the welfare of the American military, their families, veterans, and the public.

NF research is a critical part of our military’s research mission. Occurring in one in every 3,000 births (more than cystic fibrosis, Duchene muscular dystrophy, and Huntington’s disease combined), NF causes tumors to grow along the nervous system and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. In addition to benefitting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community.

NF research is at a critical stage – great strides have been made but continued funding is needed to translate clinical trials into effective treatments. I respectfully request that you continue Congress’ longstanding support of NF research by providing funding for the Army’s Neurofibromatosis Research Program. With your support, we can move closer to the goal of successful therapies for NF, and improve the lives of those affected. Thank you.

And this:

It’s time to make your voice heard!

Congress is entering the FY 2014 budget season, and the primary federal support for NF research comes from the Congressionally Directed Medical Research Program (CDMRP) managed by the Department of Defense. This funding has been critical to the advances we have made in NF research. It is now more important than ever that the CDMRP continue to support NF medical initiatives. It is through further funding that clinical trial breakthroughs will be translated into FDA approved treatments. Please ask your Representative to support NF research. You can do so by filling out the form below, include a brief note (we’ve included some sample text that you can use), and click send. Your message will be delivered to your Representative and together – as one voice – we will move closer to the goal of ending neurofibromatosis.

We gratefully acknowledge Rep. Luis Gutierrez for his leadership in circulating a "Dear Colleague letter" to his fellow members seeking their support.

If not for the DoD and its involvement with CDMRP those of us with NF would be up sh*t creek.

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Arrow 4 replies Author Time Post
AndyTiedye Apr 2013 OP
Lasher Apr 2013 #1
Scuba Apr 2013 #2
uponit7771 Apr 2013 #3
LineNew Reply Neurofibromatosis research is funded in part by the DoD.
ChazII Apr 2013 #4
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