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The Foundation and its volunteers advocate for federal funding to support NF research.

Update March 30, 2010

The deadline for Representatives to submit member requests was March 19, 2010.  We met with a series of Representatives and their staffs in early March to update them on the program and seek their support to request a $25 milion appropriation to the CDMRP-NFRP for FY2011.  The House is expected to first focus on passing a supplemental defense bill for the war effort, then take up the FY2011 defense budget afterwards, which we expect will be in May.

Thank you to all of our supporters who wrote letters to their Representatives.  Attached here is a copy of the "Dear Colleague"  letter organized by the NF Coalition and circulated by Rep. Luis Gutierez (D-NY).   We thank Rep. Gutierez for his leadership on circulating this letter, and also thank each of the members listed below who signed on in support.  

Signers as of March 19:  Tammy Baldwin (WI-2nd). Howard Berman (CA-28th), Andre Carson (IN-7th), Bill Delahunt (MA-10th), Rosa DeLauro (CT-3rd), John J Duncan Jr (TN-2nd), Vernon Ehlers (MI-3rd), Bill Foster (IL-14th), Barney Frank (MA-4th), Raul Grijalva (AZ-7th), Stephen F. Lynch (MA-9th), Dale Kildee (MI-5th), Mary Jo Kilroy (OH-15), Chris Lee (NY-26th),Jim McGovern (MA-3rd), Tom Petri (WI-6th), and Chris Van Holen (MD-7th).

If you live in one of these congressional districts, please write or call your representative to thank them for their support and share with them the success of this program and its importance to you.

Our efforts in the House now turn to organizing NF supporters to visit their Representatives local offices to further solidify support for this program, particularly to those Representatives who are members of the defense subcommittee (list below).  If you live in one of these districts and are interested in getting involved with this effort, please contact either Stephanie Yolish ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) or Kelly McGowan ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it )

The next phase of our advocacy work will focus on the Senate, and will begin as soon as the House bill is released.  This is expected in late May.  Please check this page, and our blog, regularly for updates on our advocacy campaign and how you can help preserve this vital federal funding.  

Update March 4, 2010

We lost a great champion with the death of Congressman John Murtha in February.   Rep. Murtha was a key leader in establishing the CDMRP in the 90's remained a strong advocate for the program throughout his career.  Rep. Norm Dicks has assumed the chairmanship of the defense subcommittee of the appropriations committee.  We are currently working with members and their staffs to secure their requests for including $20 million of CDMRP-NFRP funding in the FY2011 budget.  

We are asking all NF supporters to call or email their Representatives as soon as possible and share with them the importance of this program.  Below is a list of members of the defense subcommittee.  If your Representative a member of the committee, your voice is very important - please ask them to  support a $20 million funding level for the CDMRP-NFRP for FY2011.  If your Representative is not a member of the committee, please ask them to let Chairman Dicks and Ranking Member Young know of their support for this level of funding for 2011.

Update December 21, 2009

On December 16th, the House voted to approve the FY2010 defense appropriations bill which included $13.75 million for the CDMRP-NFRP.  While this amount was reduced from the $25 million in the original House bill, it is a 37% increase over the $10 million in FY2009. 

The Senate passed the bill on Saturday, December 19th, and President Obama signed it later that day.  

Members of the House Appropriations Committee

Defense Subcommittee

Members of the Senate Appropriations Committee,

Defense Subcommittee

Leverage your effort by asking family and friends to write as well.  The more voices our legislators hear from, the greater our chances of preserving this important program.

History

NF Research is funded through a variety of federal agencies, including several of the National Institutes of Health (NIH), and the Congressionally Directed Medical Research Program - Neurofibromatosis Research Program (CDMRP-NFRP).   

In 1991 the Foundation began a formal advocacy and lobbying program for increased federal funding of NF research. NIH is the primary source of federal funding for medical research, but various other agencies support research initiatives as well. In 1996 Congress added Neurofibromatosis to the Congressionally Directed Medical Research Program (CDMRP-NFRP). As with NIH, this funding does not go to the Foundation, but directly to researchers through a strict peer review process. More information on the CDMRP-NFRP can be found at this link (http://cdmrp.army.mil/nfrp/default.htm) and in the research area of our website.

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, and we thank the legislators that help make this possible. Over the last three years the program's funding has declined from a peak of $25 million in FY05 to $8 million in FY07.  For FY2010 the program was increased to $13.75 million, and we need to work to preserve and increase this level.  Of particular note, in FY05 the NFRP established the NF Clinical Trials Consortium. Comprised of 10 major hospitals nationwide, the Consortium is a pipeline for testing drugs for NF. The Consortium will initially focus on NF1 for proof of concept, but once established, it will have the option of expanding to encompass NF2 and Schwannomatosis studies.

We are all aware of the budget pressures our country faces, and understand that the $25 million funded in 2005 may not be realistic in the current environment. However, this small program has accomplished so much, and as we enter what we believe will be a period of rapidly increasing clinical trials, this is a particularly important time for continued support of this funding. We are asking all of you to contact your Congressman and Senators to seek their support.

 It is important to note that this funding is not an earmark. It is not directed to any one institution, state or district. It is a long standing program that makes grants solely on a peer review basis. Further, this is not a partisan issue - this funding has benefited over the years from strong support from both Democrats and Republicans. The accomplishments and return on investment from the CDMRP are a shining example of what the federal government can achieve when legislators work with the scientific community and non-profit organizations.


For a contact list of all Representatives by state please click here. If you don't know your Representative, click here to be taken to the House website. Entering your zip code in the box in the upper left corner will bring up your Representatives website and contact information.