Dystonia Association of Kentucky

ACTION ALERT!!

Dear Dystonia Advocates:

The Dystonia Advocacy Coalition is working to secure additional dollars for
dystonia research through a fund in the Department of  Defense (DoD). We
need your help to make this happen. On my website (www.dystoniaassociation.org) 
below is an ACTION ALERT providing an overview of the issue and requesting
your assistance to enlist your Representative in this effort.

Call your representative to urge them to show their support for the DoD
peer-reviewed medical research program and the inclusion of dystonia as a
condition eligible for study.

There is also a feedback form providing you the opportunity to summarize
your call or meeting and tell us if there is any follow-up or action needed. Should
you have any questions, please feel free to contact me at slipeach@bbtel.com .

Thank you for your many efforts.

Sincerely,
Sandra Lee Isaacs
CEO/Founder
Dystonia Association of Kentucky (DAK)
Tel.: 270-828-5981

OCTOBER 19, 2007

 

*ACTION ALERT* *ACTION ALERT * ***ACTION ALERT**

 

DEPARTMENT OF DEFENSE PEER-REVIEWED MEDICAL RESEARCH PROGRAM

 

     On Wednesday, October 3rd, 2007, the United States Senate passed the fiscal year (FY) 2008 Department of
Defense (DoD)Appropriations bill (H.R.3222) by voice vote. Included in the Senate-passed version of H.R. 3222 is $50 million

dollars for the Dod Peer-Reviewed Medical Research Program. This program funds important research on conditions                that affect military personnel. While there is a well-established link between traumatic injuries and dystonia, congress must    explicitly recognize a condition before it is eligible for funding through the DoD Peer-Reviewed Medical research Program.     Presently, dystonia is not recognized on the Senate’s list of conditions eligible for companies funding the $50 million             allocation.                                                                                                                                                                                                         

 

The House of Representatives passed H.R.3222 on August 5^th, 2007, by an overwhelming and bipartisan margin, 395 to 13. Unfortunately, the House-passed version of H.R.3222 provides no funding for the DoD Peer-Reviewed Medical Research Program and subsequently listed no conditions as eligible for study. Given this and other discrepancies between the two bills, the House and Senate will conference their versions of H.R. 3222 and produce a final version, which will be sent to the President for his approval.      

 

In order to ensure that the DoD Peer-Reviewed Medical Research Program is funded in the final FY 2008 DoD Appropriations bill, and that dystonia is included as a condition eligible for study, please contact your member of the House of Representatives and urge them to send the attached letter. To locate your member of Congress simply go to www.congress.org and enter your zipcode. You do not need to contact either of your members of the Senate due to the fact that the Senate already included funding for the DoD Peer-Reviewed Medical Research Program and submitted their list of conditions eligible for study.

 

Additionally, it is important that you contact the members of the House  Defense Appropriations Subcommittee that will be negotiating the final FY 2008 DoD Appropriations bill with members of the Senate, and solicit their support for the DoD Peer-Reviewed Medical Research Program and dystonia. The members of the Subcommittee are listed in the table below. To locate their contact information please go to www.congress.org and simply type their name into the search field.

 

 

CALL YOUR REPRESENTATIVE TO URGE THEM TO SHOW THEIR SUPPORT FOR THE DOD PEER-REVIEWED MEDICAL RESEARCH PROGRAM AND THE INCLUSION OF DYSTONIA AS A CONDITION ELIGIBLE FOR STUDY

 

When calling congressional offices, you should ask for the Health Legislative Assistant. It is important to remain persistent and follow-up, these offices receive numerous calls and everyday and they may not respond to your initial call. If you contact them frequently, they will make it a priority to get back to you.

 

TALKING POINTS FOR CONTACTING A CONGRESSIONAL OFFICE:

 

·        Introduce yourself and explain your interest in supporting dystonia research.

 

·        Let them know that dystonia can result from severe head trauma.

 

·        Urge the Representative to join you in supporting the Senate position of a $50 million dollar funding level for the DoD Peer-Reviewed Medical Research Program.

 

·        Urge the Representative to join you in supporting the inclusion of dystonia as a condition eligible for study under this program.

 

·        Urge them to support the inclusion of dystonia in the list of diseases to be included in the DoD fundable program.

 

·        Ask them to support including the funding of the DoD program in the Senate version.

 

·        Ask the Representative to send a letter in support of this initiative and offer to forward their offices the attached letter via fax or e-mail.

 

·        Thank the Representative for his/her time and leadership in ensuring better health care outcomes for all Americans.

 

WHEN SPEAKING TO CONGRESSIONAL STAFF IT IS IMPORTANT TO REMEMBER THAT:

 

·        You should always be honest; there is no need to exaggerate problems or results.

 

·        You should make sure the conversation stays polite and respectful. Listen to what

      they have to say and engage in constructive dialogue, even if it’s agreeing to 

      disagree.

 

·        You should never get frustrated and engage in an argument. Irreparable harm can be

      done by unnecessarily upsetting a legislator’s staff member. 

 

·        You should always begin or end the conversation by thanking them for taking time

      out of their busy schedule to discuss these issues with you.

 

 

THE HOUSE DEFENSE APPROPRIATIONS SUBCOMMITTEE

 

Chairman, Congressman John P. Murtha (D-PA-12th)	Ranking Member, C.W. Bill Young (R-FL-10th)
Congressman Norman Dicks (D-WA-6th)	Congressman David Hobson (R-OH-7th)
Congressman Peter Visclosky (D-IN-1st)	Congressman Rodney Frelinghuysen (R-NJ-11th)
Congressman James Moran (D-VA-8th)	Congressman Todd Tiahrt (R-KS-4th)
Congresswoman Marcy Kaptur (D-OH-9th)	Congressman Roger Wicker (R-MS-1st)
Congressman Robert Cramer (D-AL-5th)	Congressman Jack Kingston (R-GA-1st)
Congressman F. Allen Boyd (D-FL-2nd)
Congressman Steven Rothman (D-NJ-9th)
Congressman Sanford Bishop (D-GA-2nd)

 

PLEASE URGE YOUR CONGRESSMAN TO SEND THE LETTER BELOW

 

(DATE)

 

The Honorable David Obey

Chairman, Committee on Appropriations

House of Representatives

H-218 Capitol

Washington, D.C. 20515

 

The Honorable John Murtha

Chairman, Subcommittee on Defense

Committee on Appropriations

House of Representatives

H-149 Capitol

Washington, D.C. 20515

 

 

Dear Chairman Obey and Chairman Murtha:

 

As you work to finalize the Fiscal Year 2008 Department of Defense Appropriations Conference Report, I am writing to request that the House recede to the Senate position and provide funding for the DoD Peer-Reviewed Medical Research Program, and include “dystonia” as a condition eligible for study under the program.

Dystonia is a neurological movement disorder characterized by involuntary muscle contractions that cause uncontrollable movements and abnormal body postures. While treatments for dystonia exist, such as deep brain stimulation and botulinum toxin injections, there is presently no cure. The exact causes of dystonia remain a mystery; however, there is a well established link between post traumatic movement disorders, like dystonia, and head injuries.

 

Making dystonia a condition eligible for funding under the DoD Peer-Reviewed Medical Research Program would be an appropriate course of action as the prevalence of dystonia has increased due to combat injuries sustained by military personnel in Afghanistan and Iraq.

 

Thank you in advance for your consideration of this request. Please do not hesitate to contact me if you have any questions or need additional information.

 

Sincerely,

 

 

Member of Congress