White House Sickle Cell Disease (SCD) Reception on  World Sickle Cell Day (June 19, 2013)
  • Petitioned Mr. Kareem Dale

This petition was delivered to:

Special Assistant to the President for Disability Policy
Mr. Kareem Dale
Office of Faith- based and Neighborhood Partnerships
Mr. Joshua Dubois
Secretary of Health
Kathleen Sebelius
U.S. House of Representatives
Georgia-05
Rep. John Lewis
California-33
Rep. Henry Waxman
Virgin Islands-01
Rep. Donna Christensen

White House Sickle Cell Disease (SCD) Reception on World Sickle Cell Day (June 19, 2013)

    1. Dominique and Michael Friend
    2. Petition by

      Dominique and Michael Friend

      Harrisburg, PA

Dear Kathleen Sebilus, Mr. Joshua Dubois, Mr. Kareem Dale:

While there is a significant population of people with Sickle Cell Disease (SCD) in the United States, the worldwide numbers are staggering and increase significantly into the millions. In Uganda alone, 25,000 children are born with SCD each year. In Ghana, 16,000 children born within the last three years have SCD. The disease is not only found in Africa – it affects significant portions of Mediterranean, Latino and Indian populations. It is even one of the most prevalent genetic diseases in the United Kingdom.

I have a special interest in promoting awareness of this deadly disease that affects 1 in every 400 African Americans. It is a disease that has been overlooked from the national spotlight; in fact, many people believe it has been cured. Although childhood mortality from SCD has dropped and recent clinical trials for bone marrow and stem cell transplants hold promise for an eventual cure, today the average American adult with SCD only lives into their forties.

The burden of being a caretaker of someone living with this disease is often compounded by its “invisible: nature, by the inability of family and friends to comprehend the unseen pain and the seemingly random episodes. My determination to raise awareness of Sickle Cell Disease – it’s continued prevalence, the lack of improved treatments and the need to understand the pain and fear that a patient faces during an episode. Nothing is more empowering in the worst moment of fighting Sickle Cell Disease than the knowledge that you are not alone.

 

Michael A. Friend

Care taker - SCD

 

 

Recent signatures

    News

    1. Reached 25 signatures

    Supporters

    Reasons for signing

    • MARGIE J. LATEEF YOUNGSTOWN, OH
      • about 1 year ago

      I am signing this petition because I am "LIVING" with Sickle Cell Anemia and I believe we need more awareness of SCD and more funding to help eradicate this extremely painful and debilitating blood disorder. Centuries of this disease is more than enough time to rid this world of this disorder. Thank-You for all of your help. It is greatly appreciated. Peace and Blessings (P&B)

      REPORT THIS COMMENT:
    • Tima Baker NEW YORK, NY
      • over 1 year ago

      I have SCD

      REPORT THIS COMMENT:
    • Tyrane Lewis BYRON, GA
      • over 1 year ago

      Close friends fighting through this disease and mankind

      REPORT THIS COMMENT:
    • Tonya Penson FORT VALLEY, GA
      • over 1 year ago

      I have family members and close friends that have been affected by Sickle Cell Anemia.

      REPORT THIS COMMENT:
    • CaRita Hall KANSAS CITY, MO
      • over 1 year ago

      I am a 53 year old (SS)SCD survivor. The medical challenges I face daily are not easy ones. Thee should be more consistency in the care of the SCD patient and more tolerance to the need of a SCD patient.....

      REPORT THIS COMMENT:

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