Senate Bill Threatens NF Research

SENATE BILL THREATENS NEUROFIBROMATOSIS AND OTHER RESEARCH!

Update: Thanks to the grassroots efforts of NF supporters and those for research on other disorders, Senator Durbin passed an amendment to protect the Congressionally Directed Medical Research Program on Tuesday, June 7th, 2016.

The Neurofibromatosis Research Program (NFRP) is part of the Congressionally Directed Medical Research Program in the Department of Defense (DoD), and funds innovative and cutting edge neurofibromatosis research. Funding for NFRP, as well as many other disorders, will be threatened in the coming weeks as the Senate considers the National Defense Authorization Act and we need our communities to let their Members of Congress know how crucial research programs in the CDMRP are.

Language in this bill threatens research for NF, as well as cancer (breast, prostate, pancreatic, ovarian, kidney, ALL CANCER), Alzheimer’s, arthritis, autism, Chrohn’s/colitis, Parkinson’s, multiple sclerosis, asthma, diabetes, muscular dystrophy and other disorders.

The good news is that a moment of your time can help preserve these important research programs!

NF Midwest is urging all supporters of neurofibromatosis research to write or call their Senators immediately and ask them to oppose the language in this bill that could effectively halt a lot of valuable research. Please forward this link to as many people as possible–especially patient advocacy groups and other supporters of NF research (and other disorders)—and help NF Midwest disseminate this message via social media posts, blogs, or even hard copy handouts.

NF Midwest recommends taking the following steps to contact U.S. Senators before a vote takes place on or around June 6.

To WRITE Your Two Senators:

• Visit Capwiz at NF Network to get a message directly to your Senators about protecting NF research.
• Or email them directly through their website.

To CALL Your Two Senators:

• Call the Senate Switchboard at 202-224-3121, and ask for the Senator’s office.
• Once connected, ask for the staffer that works on health care issues for the Senator.
• Tell them:
  – Who you are and where you live.
  – Let them know that you oppose language in the National Defense Authorization Act of 2017, S. 2943, specifically Sections 756 and 898 because that language could be used to eliminate all medical research by the Department of Defense, specifically neurofibromatosis research programs.
  – Ask that the Senator support amendments to strike this language from the bill and communicate this support to the Leadership.

For more information, contact . NF Midwest appreciates whatever efforts supporters can make to protect neurofibromatosis research.