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

EDUCATE

Spread awareness about sickle cell disease, clear up misconceptions, and advocate for better understanding in the medical community.
SUPPORT

Provide connections to up-to-date medical care, create community support networks, and stand by families through every step of their journey.
ADVOCATE

Work toward systemic change to address disparities in care and ensure equitable access to resources for those affected by sickle cell disease.

HELPFUL RESOURCES

Knowledge is power, especially when it comes to managing and understanding sickle cell disease. Our Helpful Resources page provides a curated list of educational materials from trusted, medically sound, and research-backed sources.

Discover key facts about the disease, its genetic causes, treatment options, and the challenges faced by those living with it. Whether you're a concerned community member, a student, or simply curious, these trusted resources will provide you with the knowledge to better understand sickle cell disease and its significance.

This website, from medical experts at Cleveland Clinic, a renowned healthcare institution, provides comprehensive information on sickle cell disease, including its causes, symptoms, diagnosis, treatment options, and potential complications.
Click here.
Be The Match is a nonprofit organization that operates the national bone marrow donor registry, connecting patients with life-saving donors for bone marrow and stem cell transplants. This resource provides information on joining the registry, the donation process, and how donors can help patients with blood disorders, with guidance from experts in transplant medicine.
Click here.
The Foundation for Sickle Cell Disease Research (FSCDR) is a nonprofit organization dedicated to advancing research, education, and treatment for individuals affected by sickle cell disease. This resource provides information on clinical trials, advocacy efforts, and patient support, with content developed by medical professionals and researchers specializing in sickle cell disease.
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BOARD OF DIRECTORS

In addition to a team of hands-on volunteers, we have an exceptional board of directors. These leaders lend a diverse array of knowledge and expertise and graciously walk alongside and support the mission of The Riley Foundation.