Finding my place in sickle cell disease advocacy
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From left, Valerie Bey chats with Sheinei Alan, MD, PhD, and director of clinical research at the Inova Adult Sickle Cell Center in Fairfax, Virginia. (Courtesy of Valerie Bey)
In recognition of Sickle Cell Disease Awareness Month in September, the Sickle Cell Disease Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by sickle cell disease, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #SickleCellDiseaseAwarenessMonth, or read the full series.
I knew the words “sickle cell disease” long before I understood what they truly meant.
My niece, Clarissa Pearson, was born with the disease. I loved Clarissa deeply, but I didn’t yet understand how completely the disease could shape her life. I did not fully see the pain, uncertainty, repeated hospital stays, and emotional strain she and her parents carried.
Clarissa changed that for me.
In 2011, she founded The Heart of Gold Sickle Cell Foundation of Northern Virginia. Her mother, Gaynelle Pearson, helped her build and guide the young organization. Clarissa wanted families to have reliable information, encouragement, stronger support, and a voice in decisions affecting their care.
When Clarissa passed away on March 10, 2021, just days before her 42nd birthday, our family lost someone irreplaceable. We also felt a responsibility to protect the mission she had begun.
Among Clarissa Pearson’s advocacy accomplishments was founding The Heart of Gold Sickle Cell Foundation in 2011. (Courtesy of Valerie Bey)
Today, my sister, Melanie Pearson Hurley; my cousin, Edna Williams; my brother and Clarissa’s father, Clarence Pearson, MD; and I help carry that mission forward. With the support of volunteers, community partners, and a grant from the Virginia Department of Health, the foundation provides education, wellness programs, advocacy, patient and caregiver support, and opportunities for families to connect with trusted professionals.
One part of our outreach is “Blood, Sweat & Cells: Real Talk About Sickle Cell Disease,” the podcast I created and host. After 36 years as a television and video producer, I knew storytelling could make complicated information understandable, personal, and useful.
The podcast offers an engaging, informative, and supportive look at the realities, breakthroughs, and triumphs of living with sickle cell disease. Guests include patients, caregivers, advocates, community partners, mental health professionals, and leading specialists from organizations such as the Inova Adult Sickle Cell Center, George Mason University’s Center for Community Mental Health, and Johns Hopkins University.
We talk about issues that affect daily life, including family relationships, caregiving, mental health, the transition to adult care, eye and dental health, employment, clinical research, and the experiences of people who have undergone bone marrow transplantation or gene therapy. Most importantly, we create space for sickle cell warriors to speak for themselves.
I began this journey realizing how much I did not know. I have learned that advocacy begins with listening, and that listening must lead to action.
Clarissa gave our family a mission. Through the foundation and “Blood, Sweat & Cells,” we are carrying forward her heart, her courage, and her voice.
“Blood, Sweat & Cells: Real Talk About Sickle Cell Disease” is available on all major podcast platforms.
