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

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.   

Thank you to all NF supporters who participated in this years advacacy campaign!   For more information please check our the blog entry with additional details.

Update October 31, 2009

With only four of twelve FY2010 appropriations bills passed by today's expiration of a continuing resolution (CR),  Congress has passed another CR that will expire on December 18th.    Although the healthcare debate is taking center stage this fall, this  new CR should allow sufficient time for both chambers to finish their work on appropriation bills and have them on the Presidents desk in December.  We are cautiously optimistic that the $25 million for the CDMRP-NFRP in the House version of the defense appropriations bill will be included in the final bill, and will update this page as soon as the final bill is signed. 

Thank you to the many supporters who participated in our advocacy campaign this year. 

Update August 24, 2009

Please visit our blog entry for the great news of $25mln included in the House appropriations bill for NF Research. 

There is still much work to done.  We applaud the House members, and particularly the Defense Subcommittee, for their recognition that this vital program has demonstrated a record of accomplishment and merits restoring the funding back to the level of FY2005.

This is only the first step in the appropriations process.  The Senate will be working to draft their version of the defense appropriations bill when they return to DC after Labor Day.  After this bill passes the Senate, Members from each house form a conference committee and meet to work out the differences.   After reaching a compromise, a written conference report is submitted to each chamber.  After the conference report is approved by both the House and the Senate, the bill is sent to the President for his signature.

 To help support this program we need you to do two small things:

1.  Write both of your Senators to ask for their support to maintain the level of funding in the House bill.  As with the House, members of the Defense Subcommittee are the key decision makers on the final level of funding included in the bill.  Click here to download a sample Senate letter.  For contact information for Senators please visit www.senate.gov.

Members of the Senate Appropriations Committee, Defense Subcommittee

2.  While the House has completed their work on the bill for this year, it is important that we write our Representatives to thank them for the House leadership on this program.   While all voices are important, the subcommittee members who are key to this process are listed below.  If you live in one of their districts please contact them to thank them, and encourage your friends and family to do the same.  Click here to download a sample House letter, and to locate your Representatives website and contact information please visit www.house.gov.   

Members of the House 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 $10 million in FY07. 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 is not realistic in the current environement. 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.