International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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UMDF

Discussion in 'Action Alerts and Advocacy' started by *GG*, Sep 29, 2017.

  1. *GG*

    *GG* senior member

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    Concord, NH
    I subscribe to their Emails, and this was sent to me today. Perhaps this research will help us out?

    "Right now, the U.S. Senate is considering four provisions in the National Defense Authorization Act (NDAA) that will stop critical medical research. The committee is considering provisions that place unnecessary restrictions on the Department of Defense Congressionally Directed Medical Research Program (CDMRP). If approved, these provisions will prevent the CDMRP for making breakthroughs that improve and save lives.

    Patient, because of your efforts in advocating, UMDF has successfully added Mitochondrial Disease and Dysfunction research is part of the CDMRP program. This has resulted in nearly $20 Million in funded research projects that could benefit our entire community.

    In addition to that, UMDF has been able to provide the CDMRP with members of the mitochondrial disease community, both patients and researchers, to evaluate these programs and their impact on patients.

    A new study “Role of mitochondrial DNA damage and dysfunction in veterans with Gulf War Illness” recently appeared in the journal PLOS ONE. The study shows that veterans with GWI have damage consistent with mitochondrial dysfunction. Symptoms of GQI include fatigue, widespread pain, exercise intolerance, and cognitive dysfunction.

    These symptoms are consistent with mitochondrial dysfunction. Research funded under the CDMRP is currently investigating these issues and, if successful, may find treatments and cures that will impact 30% of U.S. Troops who served in the Gulf War, while helping thousands of patients who battle mitochondrial disease.

    Senators Rick Durbin (D-IL) and Senator Roy Blunt (R-MO) are circulating a 'Dear Colleague' letter to the Senate. The Durbin-Blunt letter asks the Conference Committee to strike these four provisions, allowing the CDMRP to continue funding innovative research. CDMRP efforts are critical for members of our military and their families, and offer hope to Americans across the nation. If these four provisions are eliminated, the CDMRP will continue to fund critical research into areas of national interest including those with mitochondrial disease.

    Click here to urge your Senators to sign on to the “Dear Colleague” --- It must be sent by October 5, 2017!

    Thank you for being a voice for our mitochondrial disease community on these important issues!"

    http://pi.umdf.org/actioncenter
     

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