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
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EDUCATE
Spread awareness about sickle cell disease, clear up misconceptions, and advocate for better understanding in the medical community.
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SUPPORT
Provide connections to up-to-date medical care, create community support networks, and stand by families through every step of their journey.
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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.
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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.
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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.
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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.
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Shauna Riley
EXECUTIVE DIRECTOR
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Sandie Merriam
BOARD MEMBER
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Sheila Paganini
BOARD MEMBER
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Whitney Thompson
BOARD MEMBER
OUR DATA SPECIALISTS
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Jeremy Williams, Sr.
NCFM Technology Consultant
As the founder of SaNDAI Global and SaNDAI Cares, Jeremy Sr. guides strategy and partnerships for both entities. SaNDAI Global is a data‑intelligence firm delivering modern analytics solutions, while SaNDAI Cares equips people worldwide with data and AI skills. With more than two decades of consulting experience, he leads AI‑driven initiatives supporting the NCFM Sickle Cell Support Group, such as implementing a CRM managing over 20,000 contacts and designing data dashboards for statewide outreach while incorporating AI technologies in the process.
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Jeremy Williams, Jr.
NCFM Technology Consultant
As Director of Operations at SaNDAI Global, Jeremy Jr. oversees the execution of analytics and AI projects. He also contributes to SaNDAI Cares programs that teach data and AI skills. For the NCFM Sickle Cell Support Group, he manages digital initiatives—including a web portal, CRM integration, and data dashboards—and deploys AI-powered chatbots to streamline access to educational resources.
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Jayden Williams
NCFM Technology Consultant
As Data Systems Manager at SaNDAI Global, Jayden designs and maintains the firm’s data infrastructure. He supports SaNDAI Cares’ DataGen Scholar program, which equips students with data and AI skills. For the NCFM Sickle Cell Support Group, he leads the setup of data pipelines and dashboards that use AI and analytics to manage screening data and optimize community engagement, and assists with implementing AI‑powered chatbots for better information access.
GRACIOUSLY supported BY
