Advocacy
ADVOCACY ALERT:
TELL CONGRESS TO SUPPORT NF RESEARCH
Flash Update June 13, 2013
The House has completed their version of the appropriations bill, which includes $15 million for the NF Research Program. Thank you to all supporters who emailed their Representatives back in May and helped secure this great result. We are not done yet though. The Senate will be taking up the bill in early July, and we will be launching our Senate email campaign later this month. Please look out for our advocacy email with instructions, and check back with this page.
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.
More detail and history can be found on this program below, but at this time we are focusing on contacting the House of Representatives. In May/June the Senate is expected to begin debate on the bill, and we will be reaching out again to contact Senators at that time.
What You Can Do
Your elected officials need to hear from you! We’ve made the process easy. Just fill out the form below and send a personal note expressing your support for NF funding. In order to have the greatest impact, please include your name and address, and your note will be delivered to the elected official that represents you in Congress.
Here is some sample text you can include in your note; feel free to modify and add your own personal story (click inside the text to select all):
Update April 2, 2013
Congress completed the FY13 appropriations process in March, and immediately turned their attention on FY14 which begins October 1. The Congressionally Directed Medical Research Program- NF Research Program is funded through the health area of the Dept. of Defense budget. Since its inception in 1996, this program has funded over $240 million in NF research. In general NIH is the primary federal funding source of basic research on NF. The NFRP is focused on clinical research, and the Children’s Tumor Foundation has designed its research program to focus on translational science and preclinical testing that brings these basic discoveries into the clinic. Comprising 13 hospitals nationwide focusing on NF1 and NF2, the NF Clinical Trials Consortium is the centerpiece of the NFRP. Continued federal funding to support these clinical trials is vital to advancing treatments to FDA approval. The House is currently working on their version of the appropriations bill, with the Senate expected to begin work in June. Please take 5 minutes now to email your Representative through the link above. You do not need to have NF to support this initiative. Please share this page and ask your family and friends to write in support as well.
Update April 1, 2013
Before leaving for recess on March 25 Congress completed the appropriations bill that included $15mln for the CDMRP-NFRP for FY13. We now turn our focus to FY14. The House will begin their work on the bill in late April, and requests for programatic funding are due by April 10.
Update March 1, 2013
Given the state of Congress and the federal budget, we have purposely taken a very quiet approach this year. In a normal year we would be launching our email campaign this month, but with the sequester now a reality, this is anything but a normal year in appropriations.
Congress could go down several paths. They could do nothing, and let the sequester cuts ripple through the agencies. This would likely have a severe impact on the CDMRP, with the real possibility of zero funding this year. Congress could extend the Continuing Resolution (CR) put in place last fall that expires in March. This would restore much of the defense budget, but would still put the CDMRP under pressure as specific program choices would shift from Congress to the Pentagon. Lastly, Congress and the administration could come to a comprehensive budget deal. While this would likely bring a cut to the CDMRP, it would preserve the program and the momentum in research. However, the last choice is the least likely given the current climate.
We will continue to monitor the situation, and update our supporters on this page and by email with material changes.
Update 9/25/12 - Before recessing last week Congress did not pass appropriations bills for FY2013 which begins on October 1. To keep the goverenment funded Congress sent to the President a six-month Continuing Resolution (CR) which he is expected to sign this week.
The CR gives Federal agencies authorization to continue funding operations until March. As in past years when budgets were delayed, agencies will not fund programs like the CDMRP until the full appropriations bill is passed.
The current status is that the House passed a defense appropriations bill earlier this summer, which included $15 million for the CDMRP-NFRP. However, the Senate did not pass their version, which forced the passage of the CR. We will hold off asking supporters to contact their Senators until Congress returns in early 2013 and will be considering the full defense appropriations bill.
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