THE Q&A: KiKi Shepard is raising awareness for sickle cell

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By Darlene Donloe

Contributing Writer

At one time, KiKi Shepard was best known for her work on “Showtime at The Apollo.”

Today, the personable television host, dancer, and actress is best known for raising awareness for sickle cell disease through her KIS Foundation.

On Nov. 14, Shepard will host UPS presents KiKi Shepard’s fourth annual Celebrity Golf Classic, hosted by former Los Angeles Lakers player and coach Byron Scott. The charity event, which benefits the programs and services of the KIS Foundation Inc, will take place at the Porter Valley County Club in Northridge.

Celebrities expected to take part in the golf classic include James Pickens Jr., (“Grey’s Anatomy”), Ty Dolla $ign, Dawnn Lewis (“It’s A Different World”), Norm Nixon, Derek Fisher, Rocky Carroll (“NCIS”), Meta World Peace, Nicole Murphy and more.

There are several types of sickle cell disease.

The Centers for Disease Control and Prevention describes sickle cell disease as a group of inherited red blood cell disorders. Red blood cells contain hemoglobin, a protein that carries oxygen.

Healthy red blood cells are round and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has sickle cell disease, the hemoglobin is abnormal, which causes the red blood cells to become hard and sticky and look like a C-shaped farm tool called a “sickle.”

The sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious health problems such as infection, acute chest syndrome and stroke.

A native of Tyler Texas, Shepard, who carries the sickle cell trait, said it affected her when a personal friend’s brother suffered from sickle cell anemia — ultimately dying from the disease in 2003.

This year the KIS Foundation, founded 19 years ago, is focusing on young adults in transition from pediatric care to adult care.

Shepard said young adult sickle cell patients are often denied medical care in emergency rooms due to a lack of knowledge of sickle cell symptoms and appropriate procedures.

She also said sickle cell disease research is not given the same priority as similar blood disorders, which increases the need for awareness, financial research resources and an affordable, universal cure.

“The only way to make a difference is to talk about it,” said the Howard University alumnus.

I recently caught up with Shepard, a single mother of two daughters, to talk about her upcoming golf fundraiser.

DD: After 19 years, what keeps you going with your foundation?

KS: The patients, the family and the community are why I keep going. You hear so many wonderful stories. So many of them are affected by the disease. It’s hereditary. We don’t have a universal cure. I’ve been blessed. The least I can do is advocate.

DD: When did you find out you carry the trait?

KS: I found that out in 1989. The doctor said I would have problems. When I started working with the Sickle Cell Disease Association of America Inc., I went to a golf tournament in the Bahamas in 1993 or 94 and had a light bulb moment. I went to the association’s president and told them to use me. At the time I was on TV on “Apollo.” I was meeting families, going to hospitals and going to schools. Sickle cell warriors are what I call them. As I talked, I learned.

DD: What happened after that?

KS: It was 1994-95 when I had a bowling party for my birthday. I talked about sickle cell to my friends. I told them we must do for sickle cell what Elizabeth Taylor did for AIDS. We have to advocate. I got so much support.

I have good corporate sponsorship. We can meet a wider audience. Education is important. I said to myself, ‘Let me do my own thing.’ I’ve learned, the only way to make a difference is to talk about it.

DD: Do you keep up with what’s happening in research?

KS: Research is advancing at high rates. There is a one in four chance with each child. It’s a choice. We’re not telling people what to do. Just get educated.

DD: Reportedly, there is a procedure that eliminates/cures this disease — the bone marrow transplant — the procedure is out of financial reach for many families and is not always successful. I don’t think most people know that this exists.

KS: We are close in terms of the DNA — changing the chromosome in the DNA. They are trying to change it so that a child isn’t even born with it anymore.  I think a cure is on the verge.

DD: What should the community be doing right now?

KS: Go get tested. Find out if you carry the trait. Education is the key. Everyone needs to go get tested. Anyone can get it, but it mostly affects Blacks, Hispanics, Asians and people from the Mediterranean. Warm climate races seem to get it. Caucasians can get it, too. Live with knowledge.

The sickle cell community is an underserved but very deserving community.

DD: It seems your celebrity has served you well.

KS: From “Showtime at The Apollo” — people remember me. When celebrities speak, people often pause to listen. We strive to educate, advocate and raise awareness about sickle cell.

DD: What is it that most people don’t know about sickle cell disease?

KS: That it’s hereditary. People don’t check to see if they have the trait. It can be prevented by having a discussion.

DD: You used to have a bowling fundraiser for sickle cell.

KS: We did the bowling fundraiser for 15 years. We retired the bowling fundraiser because bowling doesn’t raise as much as a golf tournament. This is our fourth year. Every year has been gang busters. Even during COVID. 2019 was our first year. In 2020 we sold out. 2022 looks like it will also be a good year.

DD: How much do you hope to raise?

KS: Our plan is to raise $150,000 for one aspect and $300,000 for another. We hope to land somewhere around $500,000.

DD: What programs and services benefit from the fundraiser(s)?

KS: We have a crisis care package program. It’s a backpack stuffed with things a sickle cell warrior needs before, during and after a crisis. Everything they will need to maintain their health. It has crossword puzzles, hats, games, toiletries COVID PPO. Hand sanitizers. Herbalife is a sponsor. One year they gave us iPads. We received 100 iPads that year. We’ve also received earphones, and nail polish for girls.

DD: Who are some of your sponsors?

KS: Supervisor Holly Mitchell, Mark Ridley-Thomas, Shondra Wilson, Rocky Carroll and Jim Pickens have all been sponsors. Adidas has also worked with us. Jenifer Lewis (“Black-ish”) just went on “Wheel of Fortune” and donated her winnings to KIS Foundation. We’ve known each other since doing Broadway together. She chose us to be the beneficiary of her winnings. She talked about the work. That’s proof positive that what we are doing is good and right and necessary.

DD: Why did you choose Byron Scott to host the event?

KS: He has the trait. We chose each other. He said he would help. Plus, golf is one of his favorite sports. There was no hesitation. He said he was in our corner. I took advantage of it immediately.

DD: What are you currently working on other than the golf classic?

KS: I’m doing a movie called ‘Blackjack Christmas’ with Victoria Rowell.

“The Q&A” is a feature of Wave Newspapers asking provocative or engaging questions of some of L.A.’s most popular newsmakers or celebrities.

Darlene Donloe is a freelance reporter for Wave Newspapers who covers South Los Angeles. She can be reached at ddonloe@gmail.com.

 

 

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