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Securing federal funding for NF research is one of the most important parts of our mission.  The Foundation and its volunteers are active participants in the legislative process, and welcome everyone to join in this vital program.

UPDATE October 12, 2011

As many of you know, the primary federal support for NF research comes from the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense.  NF has been supported through this program since 1996, and this funding has been critical to the great strides we have made in NF research. With CDMRP funds, researchers have been able to:

UPDATE May 3, 2011

With the delay of the 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 Congressionally Directed Medical Research Program-NF Research Program 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 www.house.gov) asking them to sign onto this letter by contacting Nicole Dinis ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) in Rep. Gutierrez's office.  The deadline for signatures is May 10.

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.

UPDATE April 20, 2011

After one of the most contentious budget negottiations, Congress passed the defense appropriations bill for FY2011 that includes $16 million of funding for the Congressionally Directed Medical Research Program-NF Research Program.   Thank you to all NF supporters who contacted their Senators and Representatives to ensure continuation of this vital funding.

UPDATE January 13, 2011

We were advised today that the 112^th Congress, which convened on January 5, 2011,  will not be funding non-essential programs with the continuing resolution that was passed by the 111^th Congress in the lame duck session finished in late December.    This puts not just the NF Research Program, but the entire CDMRP at risk for funding for FY11.   We are reaching out to the NF Coalition and other research organizations in the CDMRP community to coordinate our efforts and ensure that  NF research remains a priority.

At this time it is too early to predict the final outcome.  Once we have some clarity on the various options Congress is considering, we will be asking our supporters to again share their concerns to support this vital research funding both for this year, and FY2012 as well.

UPDATE December 22, 2010

We are very pleased to share that the Congressionally Directed Medical Research Program-NF Research Program (CDMRP-NFRP) will be funded for $13.75 million in FY2011 (equal to FY2010).  However, our expectation in our December 1 update below was not realized.  Although the funding will be done through a Continuing Resolution that expires March 4, many programs like the Congressionally Directed Medical Research Program will receive funding at FY2010 levels.  This is great news for NF research.

With an election year, the House returning to Republican control and a lame duck session just finishing now, it was a very challenging year in Washington.  The federal budget will continue to come under close scrutiny in 2011 and beyond, but it is encouraging that Congress recognizes the value and importance of continuing federal funding of not just NF research, but breast cancer, prostate cancer, tuberous sclerosis other disorders as part of the CDMRP.

As this discussion unfolds, it is important to continue to emphasize that this program is not an earmark.  The grants funded through the CDMRP are made through a rigorous two-step peer review process, and no member can direct funds to a specific institution.  This process has performed very well, and it a great example of what the federal government can accomplish.

Thank you to all supporters of NF research who took the time to mail letters, send emails, and call their legislator's offices to seek their support to continue this vital program.  While it took longer than usual this year, securing this funding is a signal achievement of the NF community.

We will be launching our 2011 advocacy campaign in mid January to begin the process for lobbying for FY2012.  Please check back for updates at this page, but in the meantime very best wishes for a healthy and happy holiday.

UPDATE December 1, 2010

Congress came back for a lame duck session and has extended the Continuing Resolution (CR) expiration from December 3rd to December 18th.  This is a good sign, as it bodes well that Congress intends to pass full appropriation bills rather than another CR that would expire next year. 

The CDMRP-NFRP is funded through the defense appropriations bill as part of our military’s healthcare program.  The House completed their work on the bill over the summer and we expect that their bill included the $20 million requested for FY2011.  The Senate is currently working on their version of the defense appropriations bill, and we expect a conference committee composed of House and Senate members to meet quickly to work out the differences in the two versions and pass a joint bill.

Please email your Senators as soon as possible seeking their support to include  $20 million of funding for the Congressionally Directed Medical Research Program-NF Research Program (CDMRP-NFRP) in FY 2011.  This program has been vital to the advances we have seen in NF research, and its continued funding is critical in our drive to translate the progress made in the lab to actual FDA approved treatments for NF.  You can reach your Senators by visiting http://www.senate.gov/ and clicking on “Find your Senators” in the upper right corner of the site.

While all outreach is important, if you live in AL, CA, NH, IL, KS, KY, MS, MO, OH, PA, TX, UT, VT, WA, or WI your voice is particularly important.   The Senators in these states (listed below) are members of the Defense Subcommittee of the Appropriations committee which ultimately determines the success or failure of this program.

It is important to note that this funding is not an earmark – it has been in existence since 1996 and none of the funding is directed to any particular company or institution until after going through a strict, two-tier peer review process.

Please take 3 minutes now to email both of your Senators to help preserve this vital program. In addition to any personal stories you would like to add to emphasize the vital importance of this program, here is some suggested text:

I am writing to ask for your support for $20 million of funding for the Congressionally Directed Medical Research Program- NF Research Program (CDMRP-NFRP).  This program has been funded through the Department of Defense since 1996 and has been vital to the advances made in NF research.  Critical work in nerve regeneration, brain and spinal trauma and pain management have led to important advances in research, and it is the current clinical trials consortium funded through the program that offer promise of actual treatments in the very near future.

As the Senate considers the appropriations bill for FY2011 I hope you will support the $20 million requested for the CDMRP-NFRP.   Thank you.

UPDATE September 13, 2010

Congress returned to work today and the Senate Defense Appropriations Subcommittee is expected to mark up its FY2011 bill Tuesday with a Full Committee markup likely Thursday. However, from conversations late last week and today with senior congressional aides, Congress may find it difficult to pass ANY appropriations bills this month.

A Continuing Resolution (CR) will likely pass before the end of the work period to maintain funding for federal programs beyond the end of the fiscal year on September 30, until the twelve FY2011 spending bills are enacted. This first CR could run until mid-October (or even after Thanksgiving), and a second CR may be needed as lawmakers work to clear the spending package before the end of the year. After passing the CR, Democrats are expected to assemble an omnibus package, which would include all the outstanding spending bills.

Complicating things further, if Republicans win the House or Senate, they will be inclined to defer action until the next Congress so they can put their own imprint on the federal funding bills. However, the DoD bill is favored given our military engagements, and it could pass on a separate track.

UPDATE August 30, 2010

Congress will be returning from recess on September 13, and we expect the Defense Appropriations bill to be a priority.  The Defense Subcommittee marked up the House bill earlier this summer, but we will not know the details until the full appropriations committee completes their mark up, which we expect to be mid to late September.

As soon as we know the level of funding included for the CDMRP-NFRP for FY2011 we will be reaching out to all of our constituents asking them to contact their Senators and seeking their support for the amount of funding included in the House bill.  This is very important.  It is during this reconciliation process, where a conference committee composed of both Representatives and Senators meets to negotiate differences between the House and Senate versions, that the final amount of funding is established.  This bill will then be sent to the President for his signature.

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 million 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 Gutierrez (D-NY).   We thank Rep. Gutierrez 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 and 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 is 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.

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

Members of the Senate Appropriations Committee,

Defense Subcommittee

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 $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 direct you to your Representatives website and contact information.