James R. Clark Memorial Sickle Cell Foundation - Lancaster Satellite Office

James R. Clark Memorial Sickle Cell Foundation - Lancaster Satellite Office To improve the social, psychological and physiological well-being of people affected by Sickle Cell.

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Earlier this month the South Carolina Department of Health and Environmental Control launched a new state Sickle Cell Di...
12/21/2023

Earlier this month the South Carolina Department of Health and Environmental Control launched a new state Sickle Cell Disease Registry! We’re excited about how this new tool will help as we all work together to put an end to Sickle Cell Disease!

Thanks 🙏🏽 to the “The Lancaster News” for featuring the work the JRC Lancaster Satellite Office is doing in the article below!

“State's new sickle cell registry will help local foundation”

A local leader in the fight against sickle cell disease is happy to see the state stepping into help.

Doris Ealey, who runs the Lancaster Satellite Office of the James R. Clark Memorial Sickle Cell Foundation, knows firsthand the impact the disease can have on families. She has been involved with the foundation since 2016, after seeing her own daughter, a sister, two brothers, a niece and nephew suffer from the disease.

She lost her daughter, Tameka Ealey, to complications from sickle cell disease this spring.

Ealey and others fighting the disease will now be aided by the state’s collection of data on those with sickle cell disease. The S.C. Department of Health and Environmental Control launched the new South Carolina Sickle Cell Disease Registry on Dec. 1. The voluntary registry will help identify and improve the data on South Carolina residents with sickle cell disease.

“I think it will be excellent in providing resources to families with sickle cell to improve their quality of life, which is lagging at this point. We are still far behind in providing the resources and that’s why it’s important,” said Ealey, who is the local sickle cell foundation’s manager and health educator.

The foundation helps support local families affected by sickle cell disease through education, awareness and test screenings throughout the city.

Finding potential clients in the community to help them get screened for the disease will also be another step forward in spreading the foundation’s message, thanks to the new registry.

“The goal is to decrease incidences where babies are born with sickle cell disease through education and awareness screening. We also want to provide education to know where everyone’s sickle cell status is,” Ealey said.

The new registry comes after state leaders passed the Rena N. Grant Sickle Cell Disease Voluntary Patient Registry Act in May 2022 to improve the quality of life and health outcomes for individuals living with sickle cell disease.

Grant served as director of legislation for the S.C. House of Representatives’ Ways and Means Committee. After her death, state lawmakers also allocated funding for the Medical University of South Carolina (MUSC) to develop a comprehensive approach to treating sickle cell disease, raising awareness about the condition, studying ways to cure it and teaching health-care providers across the state about the disease and the pain it causes.

In 2022, MUSC opened a new expanded sickle cell center, named the Rena N. Grant Sickle Cell Center.

“As we continue to find ways to improve sickle cell care, the South Carolina Sickle Cell Disease Registry will be a step forward to improving health care access and outcomes for South Carolinians,” said Dr. David J. Cole, MUSC president.

The registry’s goal is to increase statewide education of the disease and its impact on families. It will be used to collect information and statistics about sickle cell disease across the state, which will then be used to provide additional education and treatment for individuals with the disease.

Participation in the registry is voluntary and all information entered will be protected and secured by DHEC.

While the registry provides another step toward Ealey’s long-term goal of ending sickle cell diseases, it’s also the beginning of more ways to spread awareness of the disease.

“We have a lot of work to do in educating the community, encouraging screens, and also giving them the tools to be proactive in preventing them from having a child with sickle cell disease,” she said.

Individuals living with sickle cell disease, or their caregivers, can request to register now at https://www7.gvtsecure.com/scdhec/.

Those with questions about the registration process or about participation in the registry can contact the registry team at [email protected].

Sickle cell support group The James R. Clark Memorial Sickle Cell Foundation Lancaster Satellite Office has organized a support group for the sickle cell community — those with sickle cell disease (SCD) or sickle cell trait (SCT). The foundation serves Lancaster,Kershaw and supports surrounding counties. Call 803-416-2640 for details.

Lancaster News 🗞️ https://www.pmg-sc.com/the_lancaster_news/article_e7976aa3-2fff-5ba9-b337-e0d6e9c1334a.html

Thanks to “The Lancaster News” for publishing 📰 the following article about our “Dining with the Stars” gala! We appreci...
12/21/2023

Thanks to “The Lancaster News” for publishing 📰 the following article about our “Dining with the Stars” gala! We appreciate the love from our supporters!

“Dining with the Stars Gala draws best in local talent”

The Dining with the Stars Gala was truly a star-studded event with the best and most talented in Lancaster there to show off their attire and creativity!

Sponsored by the Lancaster Satellite Office of the James R. Clark Sickle Cell Foundation, the Friday, Dec. 1, event on the campus of USC Lancaster drew 280 guests.

Host Timothy B. Cureton quieted the audience by sharing his sentiments about how beautiful everyone looked and the sounds of the season in the air. The “Face of Sickle Cell” was on parade, as the sponsor’s representatives were dressed to kill, or as we used to say in the neighborhood, “sharp as a tack!”

Guests were treated to delicious food from Jean Hegler’s Catering Service, including sauteed and spicy Meatballs, crab souffle with melba, penne pasta with vegetables and Alfredo sauce, angel hair pasta with pesto sauce, raw vegetables, ambrosia, finger desserts and tea or lemonade.

The lines were long but hearts were happy, while the music kept it moving. Everyone waited patiently for their turn and moved gracefully as the music played to the oldies — the ’70s was the choice — and all chatted and sang along with glee!

While we all dined, there was still picture taking, hugs and networking throughout the room. The buzz was certainly on throughout the evening.

As the judges were introduced, the applause grew stronger for Bobby Bailey, retired educator, drama teacher and principal; John Fisher, business owner and church music director; and Katrina Bernsdorff, drama teacher and community arts activist, as cheers flowed through the room for each of them. They had the awesome job of judging the array of talent on display that night.

Iris Waiters, performing as Aretha Franklin, treated us to “A Natural Woman” in her own Southern style. The Phazar Band and show delivered on “Purple Rain.” Tammy Gillett, performing as Mary J. Blige, really worked “Love Has No Limit.” Jessica Threatt, performing as Aretha as well, hit some notes in “Chain of Fools” that are likely still in the ceiling. Finally, Pamela DeGraffenreid, performing as Etta James, sang “At Last.” Could Beyonce do any better? I think not!

Their performances were the key to the evening and a rousing applause ensued. As the results were being tabulated, local foundation manager and health educator Doris Ealey and Dennis Bailey sang “Ain’t No Mountain High Enough,” with soulful meaning, making a vow to the community, sickle cell warriors and family that they can count on the foundation.

Ealey emphasized how serious the foundation is to tackle sickle cell and wipe it completely out! She asked the foundation board members and others to join her in this effort in song. Between the artists competition, we enjoyed hearing stories and information about how we can be the face of sickle cell in this community.

Dr. Robin Dawson of the College of Nursing at USC Columbia spoke intensely on the need for educating others and helping to advocate more for sickle cell to be cast out. Her words were tender, but spot on in addressing the needs of the warriors who fight daily and yearly to overcome the pain.

We also heard from Yvonne Donald, deputy director of the James. R. Clark Sickle Cell Foundation, who has worked 25 years as a genetic counselor, testing bone marrow and overseeing transplants. Promoting gene therapy is also a part of her job, even in the future hoping for stem cell research to be a part of treatment.

Lastly, we heard from Dr. Dexter Cook, a retired pediatrician who has assisted several patients and families in this community and others with understanding sickle cell disease. He has held babies, talked to parents, calmed fears and earnestly worked to devise more plans for care and the knowledge of what a baby needs while treatment is ongoing. He has been a doctor, friend and mentor to the the Ealey family as their daughter, Tameka, suffered with the disease.

Finally, there was the announcement of the winners. Shocking the audience with their decision, the judges called a tie between Threatt and DeGraffenreid for the No. 1 spot. Both did an excellent job and shared their creativity well. Trophies for both and applause, too!

A memorial tribute was then displayed for all, saluting the warriors we have lost this year. Tears around the room spread as pictures were shown of loved ones. Tameka Ealey, who died this spring, was the last picture shown. Her son Josiah was in attendance, declaring the bravery of his mother to bear this handsome child. As he grows, he will learn of his mother’s pursuit for more research in finding a cure for sickle cell disease.

As the evening wound down, the host announced the winners of the raffle that had circulated around the room all evening. The prizes were awesome and winners were well pleased. Closing remarks were given by Donald and Ealey.

“Be the Face and Voice for Sickle Cell in your Family and Community,” printed on the evening’s program, certainly grabbed attention at this affair.

Thanks to all who took special parts in this year’s gala. Jean Hegler and her servers, Forever Cousins 360 Photobook, TyRiffic Photography and Layton Frasier Video Services will surely be in demand now for the holidays.

A very special thanks was given to the Springs Close Foundation and all other organizations that helped to sponsor this event, as well as the talent participants for giving their time, talent and services in making the evening so successful.

The James R. Clark Foundation will long be remembered for its time, efforts and advocacy in this community. Next year? Of course, there must be another gala for all of us to kick off the holiday season and to render our thoughts and prayers for sickle cell disease victims and their families.

The Dining with the Stars Gala was truly a star-studded event with the best and most talented in Lancaster there to show off their attire and creativity!

Nominate a Warrior Family for this very special event. See details below:
11/07/2023

Nominate a Warrior Family for this very special event. See details below:

Interested in reaching out? Please fill out the information below and we will follow up with you shortly! Feel free to use our live chat feature as well.

September is Sickle Cell Disease Awareness Month. Help us to commemorate the month at this year’s Sickle Cell Festival. ...
09/01/2023

September is Sickle Cell Disease Awareness Month. Help us to commemorate the month at this year’s Sickle Cell Festival. Bring lawn chairs to line Main Street to enjoy vehicle decorations and talent participating in the parade. Immediately following the parade, meet us at the American Legion Fairgrounds for FREE festivities/activities; 360 photobooth, horse rides and petting farm, face painting, animal balloons artist, sponsors giveaways and much more!

But that's not all folks!! There will not be one, nor two, but three show stopping performances by "Forever Michael and Always Mariah" from Georgia, along with local artists the "Phazar Band". Food and merchandise vendors will also be onsite.

Please come out to support Sickle Cell and show love for those with a disability!

Address

2143 Country Club Drive
Lancaster, SC
29720

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