Help Preserve Defense Research Dollars

June 3, 2016

Rettsyndrome.org is asking you to contact your Senator to ask her/him to help preserve DOD funding that may be used for research to aid our girls and our soldiers.

Last year, for the first time, Rett syndrome qualified as an area of study eligible for funding under the Defense Department’s peer-reviewed medical program.  Researchers are currently preparing proposals seeking funds under the program to study Rett syndrome as a model for traumatic brain injury, which will aid soldiers wounded in service.  The Senate is poised to extend the eligibility of researchers studying  Rett syndrome in fiscal year 2017 and allow them to compete for $300 million in federal funds.

However, the program is now threatened by language in the DOD authorization bill that would add red tape to both the applications process and the reporting required following a grant award.  The red tape would distract researchers from the goal of developing treatments and redirect funding from clinical trials to filling out paperwork when an award is made.

Please ask your Senators to support Amendment 4369 to S. 2943 (the DOD fiscal year 2017) by emailing or calls to their offices this week and throughout next week. Look up your Senators.

Suggested Message:

Senator ------: 
Please support Amendment 4369 to S.2943. I want federal dollars to support research and not to get caught up in red tape.   

Twitter Message:

You can also join a Twitter campaign at hashtag #ResearchNotRedTape and twetting “ .@ [Your Senator’s Handle], please join me in supporting @SenatorDurbin's #ResearchNotRedTape amendment to fund @DeptofDefense medical research   

 Current Senators Working to Preserve DoD Research Funding

Currently there are 10 Senators working to preserve DOD research funding. You can thank them with emails or phone calls.
Durbin (IL)
Cochran (MS)
Reid (NV)
Blunt (MO)
Mikulski (MD)
Murkowski (AK)
Murray (WA)
Collins (ME)
Feinstein (CA)
Shelby (AL)
Casey (PA)
Gillibrand (NY)
Baldwin (WI)
Bennet (CO)
Markey (MA)
Brown (OH)
Leahy (VT)

Suggested Message:

Senator ------.  Thank you for your support for Amendment 4369 to S.2943.  I want federal dollars to support research and not get caught up in red tape. 

Twitter Message:

@[Your Senator’s Handle], Thanks for supporting @SenatorDurbin's #ResearchNotRedTape amendment to fund @DeptofDefense medical research because it will focus federal $ on important research and not red tape.

We encourage groups to tweet throughout the week using the hashtag #ResearchNotRedTape. Next Tuesday, June 7th, Senator Durbin's office will be leading a tweetstorm from 12:00 pm ET – 2:00 pm ET, and would love for you to join in with some tweets of your own.

For more information about the issue we are facing and Amendment 4369, please click here.

Updated 6/8/16:

Yesterday the Senate passed Amendment 4369 66 votes to 32 which protects medical research for service members, military families, and veterans. This is a huge win for Rett syndrome and other disorders that qualified as areas of study eligible for funding under the Defense Department's peer-reviewed medical program. Researchers are currently preparing proposals seeking funds under the program to study Rett syndrome as a model for traumatic brain injury, which would aid soldiers wounded in service.

Amendment 4369
Amendment 4369

 

If this amendment had not passed the program would have been strangled in red tape, halting progress while jeopardizing the health of military families and veterans. We are grateful to Senator Durbin who introduced the amendment and the many other senators who supported it. Thank you to the many families and Rett syndrome supporters who called and emailed your local Senators to support this amendment. Our voices, unified with many others, were heard and we are grateful that progress can continue with the DOD funding.

Read the press release here for more information about the passing of the amendment.