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Advocacy Update

By May 5, 2011December 5th, 2023Advocacy

With the delay of FY2011 appropriations bill being passed just last month, Congress now will be focusing on FY2012.   Given the budget challenges our country faces, the NF community will be asking Congress to maintain the CDMRP-NFRP at the $16 million funding level of FY2011.  Representative Luis Gutiierrez (D-IL) has written a “Dear Colleague” letter to the appropriations committee supporting this level of funding.   Please take a minute today to email your Representative (find them at asking them to sign onto this letter by contacting Nicole Dinis ( in Rep. Gutierrez’s office.  The deadline for signatures is May 10.  Below is a template letter that you may use to reach out to your representative, please feel free to add a personal story.

Later this season we will be making another push for advocacy in the House, and following the House passage of the bill we will then turn our attention to the Senate in the summer.


May  XX, 2011

The Honorable (Representative  Name)

(Office Address)

Washington, DC

Dear Representative (Name):

I am writing to ask you for your support of the Congressionally Directed Medical Research Program’s Neurofibromatosis Research Program (CDMRP-NFRP) in the 2012 Defense Appropriations Bill.

As someone closely touched by neurofibromatosis (NF), I have followed this program closely since inception in 1996, and am familiar with its great accomplishments.  These successes include the discovery of new signaling pathways, nerve regeneration, mouse model development, and direct links to cancer therapies.  Now these basic discoveries are being translated into drug development through the NF Clinical Trials Consortium, to the great benefit of our warfighters, overall military health and indeed, that of all Americans.

I am well aware of the fiscal challenges our nation faces.   However, this long-standing program has demonstrated great progress, and is an example of what our government can accomplish with the proper resources.  We are on the brink of drug trials, and this continued funding would ensure the development of safe and effective treatments for NF.

Representative Luis Guiterrez, of Illinois 4th Congressional District, is circulating a ‘Dear Colleague’ letter asking for fellow members of Congress to sign two letters.  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. The benefits of this program have been of tremendous importance to the advances we have seen in NF research. Mouse model development, learning disabilities, nerve signaling pathways, vestibular schwannma’s and MPNST’s have all seen major advances thanks to the CDMRP-NFRP. This funding has been critical to researcher’s knowledge of NF.

We must continue to invest in research and build on the successes and momentum of this program if we are to continue to advance towards treatments and a cure for NF and the numerous complications associated with it.  We respectfully request that you contact Nicole Dinis ( in Congressman Gutierrez’s office by May 10th to add your name to these letters.

Sincerely yours,

Your Name