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Neurofibromatosis and Other Research Threatened

There is an urgent and devastating threat to neurofibromatosis research, and we urge you, your friends, family and everyone you know who cares about medical research to contact their Senators today!

Soon the Senate will begin consideration of S. 1519, the fiscal year 2018 National Defense Authorization Act (NDAA). Similar to last year’s bill, S. 1519 includes provisions that severely restrict, and in some cases terminate, critical medical research by the Department of Defense (DoD) through the Congressionally Directed Medical Research Program (CDMRP).

Specifically, the bill:

• Adds an additional level of bureaucratic review and delays by requiring a certification of military applicability for all research grants and further delays the grant by adding an additional 90 days after the certification to the Armed Services Committee.

• Imposes the type of red tape on the administration of a grant contract that would be involved in building large weapons systems, even though many of the grants administered by the CDMRP are less than $1 million.

• Restricts intellectual property produced by the research.

Last year, we succeeded in removing these onerous provisions from the bill through a bipartisan amendment that was approved by a vote of 66-32. This would not have been possible without the advocacy of individuals like you, who took the time to contact your Senators to urge support for this amendment.

Senator Richard Durbin (D-IL) and Roy Blunt (R-MO) are sponsoring a bipartisan amendment to nullify the provisions related to medical research included in S. 1519, the fiscal year 2018 NDAA.

We are asking everyone who cares about medical research to contact their two Senators from their state and urge them to support the bipartisan Durbin-Blunt amendment to the National Defense Authorization Act that will ensure funding for neurofibromatosis continues. If possible, please include your personal story about how neurofibromatosis affects you and your family, and the importance of finding new treatments and cures through medical research.

There are three easy ways that you can contact your Senators NOW! Do them all or do one!

(1) CALL! “Bestest” Most Effective Quick Way!

Find the number to your Senators’ offices at www.senate.gov/senators/contact/ and CALL them and tell them……

I am calling today to urge your support for a bipartisan amendment that will be offered by Senator Richard Durbin (D-IL) to S. 1519, the fiscal year 2018 National Defense Authorization Act (NDAA). This amendment will nullify provisions included in S. 1519 that severely restrict, and in some cases terminate, critical medical research on neurofibromatosis funded by the Department of Defense (DoD) through the Congressionally Directed Medical Research Program (CDMRP).

Share your personal story if you are comfortable.

(2) EMAIL-  Next Best Way!

Email your Senators through www.senate.gov/senators/contact/. You might write this:

Dear Senator:

I am writing today to urge your support for a bipartisan amendment that will be offered by Senator Richard Durbin (D-IL)  and Senator Roy Blue (R-MO) to S. 1519, the fiscal year 2018 National Defense Authorization Act (NDAA). This amendment will nullify provisions included in S. 1519 that severely restrict, and in some cases terminate, critical medical research on neurofibromatosis funded by the Department of Defense (DoD) through the Congressionally Directed Medical Research Program (CDMRP).

TELL YOUR PERSONAL STORY HERE

Last year, by a bipartisan vote of 66-32, the Senate approved the Durbin amendment to remove similar provisions included in the fiscal year 2017 NDAA. We urge you to once again vote to protect critical medical research by voting YES on the Durbin amendment.

Sincerely,

(3) SIGN UP THROUGH A FORM – Another Decent Way

Fill out your information HERE and the work will be done for you.

 

Comments (2)

  • Hi my name is Pam I have NF1, I live in constant pain and get stares everywhere I go. At this point ther only treatment for NF is surgery which most insurance’s will not pay for as they consider it cosmetic. It is not, the tumors I have removed cause pain. Please reconsider. There are people who need your help.

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