CTF Advocacy for NF Research
We believe that ending NF will take a wide range of collaborative partnerships, including coordinated efforts with researchers and scientists, educational institutions, clinics and hospitals, industry and the private sector, non-profit organizations, patients and families, and the government. Although we firmly believe we must do our part in funding and coordinating NF research, we also understand that the federal government plays a very unique and irreplaceable role in supporting these efforts.
Since 1998, CTF leadership has spent significant time in our nation's capital to advocate directly with key Members of Congress and Executive Branch officials on behalf of a community giving its all to find a cure for NF. We provide updates on the latest discoveries resulting from government investments in NF research and discuss ways the government and the non-profit sector can partner to help support and streamline NF research moving forward. We also highlight the Foundation's community-based efforts that strengthen us as individuals facing NF through our friendships with one another.
Between these visits to Washington, D.C., we work to keep you informed on the latest and best ways you can get involved, from participating in events, to writing your government representatives, to joining us for visits on the Hill. Keep checking in to this page for the latest in our efforts and how we can help you get involved in advocating for NF research.
TELL CONGRESS TO SUPPORT NF RESEARCH
Update September 11, 2015
CTF Visits Washington, DC to Meet with Policymakers
On September 8 and 9, the Children’s Tumor Foundation visited key policymakers and appropriators in Washington, DC, including members of the offices of Senator Dianne Feinstein (D-CA), Senator Ed Markey (D-MA), and Senator Elizabeth Warren (D-MA). One of our primary goals is to advocate for continued federal support for neurofibromatosis research. We are also excited to share that we met with the White House Office of Science and Technology Policy to discuss how CTF is improving the treatment of neurofibromatosis through precision medicine.
Click here for the full blog post and photos.
Update June 22, 2015
We are pleased to report that the proposed amendment to the Defense Authorization Bill restricting research through the Congressional Directed Medical Research Program (CDMRP) has been withdrawn. The Children's Tumor Foundation will continue its efforts to educate policymakers about the direct relevance of NF research to the warfighter.
Update June 10, 2015
The Children's Tumor Foundation is committed to protecting the interests of the entire NF community. And as you know, the funding of NF research is our highest priority. We are monitoring the Defense Authorization bill very closely through our contacts on the Hill, and we will definitely let you know through social media, the website and email if we need to take action. For now, be assured that we are working all channels to protect this funding.
Update June 2, 2015
The House of Representatives Appropriations Committee today approved the FY-2016 Department of Defense Appropriations Bill which includes $15 million for NF research in the CDMRP (Congressionally Directed Medical Research Program). The next step in the process regarding this funding is approval by the full U.S. House of Representatives. The Children's Tumor Foundation will continue to keep the NF community apprised regarding this important source of NF research funding. This $15 million is level funding from FY-2015.
Update April 6, 2015
Members of Congress signed a letter requesting continued funding for NF research in 2016. Click either page below to see the letter, signed by 106 representatives from across the country.
Update March 31, 2015
Children's Tumor Foundation Goes to Washington
On March 19 and 20 leaders from the Children's Tumor Foundation went to Washington, DC to meet with members of Congress to advocate for continued federal support of funding for neurofibromatosis research in 2016. Over the course of two days, they met with:
Representative Steve Womack (AR-3)
Office of Representative Steve Israel (NY-3)
Office of Representative Betty McCollum (MN-4)
Office of Representative Ander Crenshaw (FL-4)
Office of Representative Ken Calvert (CA-42)
Office of Representative Dutch Ruppersberger (MD-2)
Office of Representative John Carter (TX-31)
Office of Representative Marcy Kaptur (OH-9)
Office of Representative Mario Diaz-Balart (FL-25)
Office of Representative Robert Aderholt (AL-4)
Office of Representative Pete Visclosky (IN-1)
Office of Representative Tom Graves (GA-14)
Office of Representative Tim Ryan (OH-13)
Visit the blog to see photos from the meetings.
Update December 15, 2014
$15 Million in NF Funding Secured for 2015
Thanks to your dedicated and passionate outreach, the Children's Tumor Foundation is pleased to announce that $15 million in federal NF research funding to the Congressionally Directed Medical Research Program-Neurofibromatosis Research Program (CDMRP-NFRP) has been approved and signed into law for 2015! The CDMRP-NFRP is a health research program managed by the Department of Defense that provides crucial funding for NF research. In part, this federal funding fuels the NF Clinical Trials Consortium, which works to bring drug treatments to patients.
For over 18 years, this funding has been essential to the great strides that have been made in NF research, and it is your participation in the NF advocacy process that has ensured that this funding is secured for the Neurofibromatosis Research Program. (Click here to read about volunteers and executive leadership who lobbied Washington, D.C.)
Update July 1, 2014
$15 Million in NF Funding was Secured Last Year. Let your voice be heard again.
Because of your dedicated and passionate outreach -- your letters and emails, your calls and your visits -- $15 million in federal NF research funding to the Congressionally Directed Medical Research Program (CDMRP) was approved and signed into law for 2014. The 2015 fiscal year starts in October of this year, and we need to push again for next year's funding. For over 17 years, this funding has been critical to the great strides that have been made in NF research, and it is your involvement in the NF advocacy process that has ensured that this funding is secured for the Neurofibromatosis Research Program.
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.
December 31 Notice: If you would like to use the link below to contact your congressional representative, please try again in a few days. The website is currently undergoing maintenance.
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):
Senator Mark Begich Highlights Visit from the Children's Tumor Foundation in His Latest Newsletter
On June 5, 2014, during the recent NF Forum in Washington, D.C., members of the Children's Tumor Foundation staff and the NF community visited Capitol Hill to lobby Congress for an increase in neurofibromatosis research funding. Senator Mark Begich (D-AK) highlighted the visit with a photo and mention in his office's latest newsletter.
ADVOCACY ALERT: Children's Tumor Foundation Works to Maintain CDMRP Funding for FY 2015
Foundation President and Chief Scientific Officer Annette Bakker traveled to Capitol Hill twice this year already to advocate for continued level funding of the Congressionally Directed Medical Research Program – Neurofibromatosis Research Program (CDMRP-NFRP) for FY 2015. The CDMRP-NFRP is a health research program managed by the Department of Defense that provides crucial funding for NF research. In part, the CDMRP-NFRP fuels the NF Clinical Trials Consortium, which works to bring drug treatments to patients.
In these visits, President Bakker met with key House Appropriations Committee offices who have jurisdiction over the CDMRP-NFRP. She highlighted the latest developments in NF research, and explained how these discoveries benefit NF patients, patients facing other diseases with similar manifestations, and patients who are also war fighters facing issues ranging from pain management to complicated bone breaks. She also highlighted CTF's work in coordinating with the wider research community to help ensure that CDMRP-NFRP funding is well-invested.
Foundation Vice President John Heropoulos joined President Bakker on her second visit this year, and spoke specifically to the work CTF is doing to build and support the NF community of patients and families. CTF has also been advocating in close collaboration with other NF organizations and other disease groups advocating for the benefits of congressionally-directed medical research more broadly.
With the NF Forum and NF Conference taking place in Washington this June, CTF is also thrilled to be planning for a delegation of the NF volunteer community to join in these advocacy visits. CTF Advocates will help us amplify the message urging government support for NF research. We have a lot of work ahead of us, but with this community, we know anything is possible!