Petition Closed

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

 

 

Letter 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
and 4 others
Representative Donna Christensen
Representative Henry Waxman
Representative John Lewis
U.S. House of Representatives
I just signed the following petition addressed to: White House Sickle Cell Disease (SCD) Reception.

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Host a reception for Sickle Cell Disease at the White house on June 19, 2013 World Sickle Cell Day.

Sickle Cell disease is over 100 year old and has not received the National attention as other prominent diseases.

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.

While there is a significant population of people with 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.

Recently, we became aware of the work of Sickle Cell Disease Advocates, Dominique and Michael Friend, and of their many efforts to raise awareness about Sickle Cell Disease. Together their heart, passion and drive to get the message out that SCD is not just as an illness but a condition that adversely impacts families and communities. We are writing today in support of the request that you facilitate a Reception at the White House highlighting leading international advocates, sickle cell families, faith based leaders, researchers and medical professionals to draw attention to the need for a heightened effort to eradicate this disease.

World Sickle Cell Day is an ideal opportunity to demonstrate American leadership in improving healthcare worldwide. We are hopeful that the White House will host this reception for SCD on during June 19th which is World Sickle Cell Day. Your support of this event will bring SCD out of the shadows and into the light by letting people know that the U.S. will be at the forefront in finding a cure for this worldwide scourge.

Sincerely,
Michael A. Friend
SCD - Health Advocate
sickle1000@yahoo.com