Celebrities use fame to combat sickle cell disease

It’s almost weird to have a day go by not hearing about someone supporting breast cancer or military families. Screenshot 2014-09-04 19.37.33Understandably so, as these issues touch many lives — I myself have had family members in each of these groups, and the pain and devastation can be immeasurable. There are many issues deserving of attention, and in this day and age, philanthropy is a tough game as all of those issues fight for a limited pool of dollars.

This is why some philanthropic celebrities use their fame to bring a spotlight to the myriad causes wanting, needing, asking for support. Enter KiKi Shepard, a decades-long veteran of film, television and stage. Best known for her fashions during her 15-year run as co-host of NBC’s “It’s Showtime at The Apollo,” Shepard has decided to use the ongoing notoriety from that show to call awareness to something dear to her heart: Sickle cell disease.

Screenshot 2014-09-04 19.36.02
For over a decade, Shepard has hosted a celebrity bowling challenge to raise funds and get the word out about combating sickle cell disease. (Courtesy of TheKisFoundation.org)

Sickle cell anemia is a blood disorder passed down through families in which red blood cells, which normally are shaped like discs, become sickle or crescent shaped. Hemoglobin is a protein in red blood cells that carries oxygen to the body’s tissues, and according to the U.S. National Library of Medicine, hemoglobin S., is the abnormal type of hemoglobin that causes sickle cell disease (SCD). The crescent-shaped blood cells are fragile, and often break into pieces that disrupt healthy blood flow while also delivering less oxygen to tissues in the body. The result is a painful, debilitating and often misunderstood disease that currently has no universal cure. Many live through regular hospitalizations, others have frequent blood transfusions, and still more with SCD die from the disease.

It’s a mistaken belief that the disease affects those of African descent -— in fact, it can be found in many different races.

Shepard discovered she had sickle cell trait (she received a normal hemoglobin gene from one parent and an abnormal one from the other, sparing her from the disease itself) in the late 1980s. Though she herself had no symptoms and was not in danger of developing SCD, she discovered its seriousness and has devoted her philanthropic efforts to combating it ever since.

Many of you have taken the #ALS #icebucketchallenge. I hope you will be so inclined to donate to The K.I.S. Foundation, Inc. to raise awareness of #SickleCellDisease which causes CHRONIC PAIN and FATIGUE that not only effects African-Americans but ALL minorities and mixed races. Stay tuned as we announce our Sickle Cell Giving Challenge during #SickleCellAwarenessMonth#September2014 #nostuntsneeded #givefromyourheart 
~Kiki Shepard

“If you can affect one or two and prevent one child from being born with sickle cell disease, it’s worth it,” she said. Her efforts include establishing the KIS Foundation, a not-for-profit organization dedicated to education about and support of those with SCD.

“The KIS foundation is a celebrity based non-profit organization. We have found when celebrities speak people often pause to listen. In that pause we seek to educate and raise awareness of SCD,” she emphasized.

Shepard is devoted to finding a universal cure for the disease (Those who are able to accept a bone marrow transplant to the one-year mark are considered “cured.” Some however, reject the transplants, so the cure is not universal). “To whom much is given, much is required,” shared Shepard. “When I meet the people , I think, ‘there by the grace of God go I.’ I’m blessed that I only carry the trait, one more step and I would have had the disease.”

For more information on sickle cell disease and how you can support the KIS Foundation, visit www.theKisfoundation.org.


Read more at the Denver Post, here.


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