About Us

Who We Are

The Riley Foundation for Sickle Cell Disease was officially established as a 501(c)(3) organization in 2019, but our journey began long before that. Since 2011, we have been on a mission to advocate for, educate, and support those affected by sickle cell disease, driven by a deeply personal story and a commitment to fill critical gaps in care and resources.

When our founder faced the heartbreaking challenges of navigating care for her son—who has the most severe form of sickle cell disease (SS)—she discovered a lack of support systems, insufficient resources, and a disconnect between funding and actual help for families. Despite reaching out to other organizations for assistance, no one responded. Instead of giving up, she took it as a sign to act.

Through personal experience, firsthand knowledge, and certification as a Sickle Cell Navigator, she built The Riley Foundation to ensure no family would face these challenges alone. Based in North Myrtle Beach, our work focuses on the local communities we know and love, like Horry, Georgetown, and Charleston counties, as well as at the state and national levels.

Our Mission

Leading a movement to turn survival into success for individuals and families affected by sickle cell disease through education, advocacy, economic mobility, and self-sufficiency programs that create lasting change in health, wealth, and opportunity.

Our Vision

The Riley Foundation for Sickle Cell Disease envisions a future where healthcare disparities no longer define the lives of individuals with Sickle Cell Disease. We are committed to bridging the gap in access, education, and support, ensuring that every person—regardless of background or socioeconomic status—receives the comprehensive, compassionate care they deserve. Through advocacy, innovation, and community empowerment, we strive to eliminate barriers to quality healthcare and create a world where those affected by Sickle Cell Disease can thrive without limits.

Frequently Asked Questions

Sickle cell disease (SCD) – also called sickle cell anemia – is a group of inherited disorders that affect hemoglobin, the major protein that carries oxygen in red blood cells.

Normally, red blood cells are disc-shaped and flexible so they can move easily through the blood vessels. In sickle cell disease, red blood cells are misshaped, typically crescent- or “sickle”-shaped due to a gene mutation that affects the hemoglobin molecule. When red blood cells sickle, they do not bend or move easily and can block blood flow to the rest of the body.

Sickle cell disease (SCD) affects more than 100,000 people in the United States and 8 million people worldwide. In the United States, 8 of 10 people who have sickle cell disease are of African ancestry or identify as Black/African American.

Sickle cell trait occurs when a person carries a single gene for sickle cell disease (SCD). Sickle cell trait does not turn into sickle cell disease. If someone has sickle cell trait and his/her partner has sickle cell trait, there is a 25% (1 in 4) chance that any child of theirs will have sickle cell disease.

More than 100 million people worldwide have sickle cell trait. It is estimated that 1 to 3 million Americans and 8 to 10 percent of Americans of African descent have the sickle cell trait. Sickle cell trait can also affect Hispanics, South Asians, Caucasians from southern Europe, and people from Middle Eastern countries.

People are tested for sickle cell trait so they understand if they might be at risk of having a baby with sickle cell disease.

The blockage of blood flow caused by sickled cells leads to many complications including chronic pain, infection, lung tissue damage, blindness, kidney disease, and stroke.

The average life expectancy in America has improved since all children are now screened for it. Life expectancy has now increased to the mid-40 years of age range.

Yes. But like all patients with chronic disease, sickle cell patients are best managed in a comprehensive multi-disciplinary program of care and a strong extended support system.

There is no universal cure for sickle cell disease. Those who are eligible to receive a bone marrow transplant do have a chance at a cure. Research in gene therapy is currently underway.

On Dec. 8, 2023, the Food and Drug Administration (FDA) approved two cell-based gene therapies for sickle cell disease (SCD), Casgevy from CRISPR/Vertex and Lyfgenia from Bluebird Bio. These are the first treatments of their kind available to individuals with SCD in the United States. The sickle cell medical community welcomes the approval of these potentially curative therapies, which mark major advances in the treatment of sickle cell disease; however, there are valid concerns about accessibility.

WAYS TO SUPPORT

Make an impact today

VOLUNTEER

Make a difference in the lives of those impacted by sickle cell disease. Join our community of dedicated volunteers who provide critical support, raise awareness, and empower those living with this condition. Sign up today to lend your time and talent.

GIVE BLOOD

Your blood can save lives! Sickle cell patients often require regular blood transfusions to manage their condition. Help ensure a steady supply by participating in one of our upcoming blood drives. Every donation counts.

DONATE

Support our mission to improve care and outcomes for individuals living with sickle cell disease. Your tax-deductible donation funds vital advocacy, and support programs. Together, we can create a brighter future.