PRINCESS ANNE — The Eastern Shore of Maryland Sickle Cell Disease Association received a $100 hole sponsorship from the Town of Princess Anne for its third annual golf tournament fundraiser set June 23 at Great Hope in Westover.

Town Commissioners, by common consensus, offered their support June 2 following a presentation about the disease from Ricky T. Ward, PhD, who also described the inequity in funding for finding a cure.

The campaign, “Shine the Light on Sickle Cell Disease,” is named that way because this blood disorder “remains largely in the shadows.”

“It’s a lifelong painful, and often invisible illness that affects more than 100,000 in the U.S., including many right here in our town and community,” Dr. Ward said, and it “disproportionately affects Black and other underserved communities” who suffer because of delayed diagnosis and limited treatment options.

Other genetic conditions may have fewer sufferers yet are better funded, he said, making it not just a medical issue but one of economic justice.

Dr. Ward said the national sickle cell organization raises around $125 million each year. By comparison, fundraising for cystic fibrosis is around $350 million for an estimated 30,000 sufferers, so “there is a disparity in funding,” he said. “That’s what ‘Shine the Light’ is.” “We’re trying to close the gap in services.”

Sickle cell disease in an inherited red blood cell disorder where healthy red blood cells become hard and sticky and form a C-shape, like a “sickle” used in farming.

Dr. Ward, the recruitment coordinator for the School of Pharmacy & Health Professions at UMES, and his wife Shanda, a licensed clinical professional counselor who is president of the local chapter, are both carriers of the gene that causes sickle cell anemia and it was passed to their daughters who “are doing well.”

He said children miss school because of constant hospitalization, and parents miss work, and become “terrified” when a teen has a pain crisis “hoping they’ll be believed and treated quickly.”

Bone marrow transplants can restore the production of healthy blood cells but do not end the person from being a carrier of the disease or pain associated with it. There are also two FDA approved gene therapies for youth and adults.

Dr. Ward said June 19 is World Sickle Cell Awareness Day, and September is National Sickle Cell Awareness Month, and the Town Commissioners were in favor of using their electronic sign by the Manokin River Park for sickle cell announcements and possibly shine red on town buildings to show their support, similar to the Go Purple campaign against substance abuse and addiction.

The Eastern Shore chapter promotes blood drives, information and outreach, makes presentations at health fairs and held a walk at the Garland Hayward Youth Center.
Registration for the golf tournament is $100 per person (teams of four) and includes breakfast, lunch and a gift bag. Jamila Jonson, internship coordinator for the PGA Golf Management program at UMES will offer two half-hour sessions for novices.

Register online at here and send checks payable to the ESMSCDA to P.O. Box 2984, Salisbury, Md., 21802 or contact Shanda Ward at esmscda@gmail.com for more information.