**FAIRFAX, VA** — September marks Sickle Cell Awareness Month, and this year, the INOVA Schar Adult Sickle Cell Center hosted a pivotal town meeting aimed at uniting advocates, county agencies, and the public to raise awareness about sickle cell disease (SCD). This event, organized in collaboration with The Heart of Gold Sickle Cell Foundation of Northern Virginia, was a resounding success that inspired and informed attendees.
The gathering featured a panel of courageous sickle cell warriors who shared their stories of struggle, triumph, and resilience. Their moving testimonies illuminated the challenges faced by individuals living with this life-threatening inherited blood disorder, which affects approximately 100,000 Americans—disproportionately impacting those of African or Latino descent.
Approximately 200 attendees engaged in presentations that highlighted the importance of understanding SCD and the sickle cell trait. Notable speakers included Dr. Drew Campbell, Director of the Comprehensive Sickle Cell Program at Children’s National Hospital, and Dr. Elizabeth Kreiger from VCU, who provided insights into cutting-edge therapies and breakthrough research. Additionally, Marcus Allen, Program Director for Children and Youth with Special Health Care Needs at VDH, shared valuable information on public health initiatives.
The event took place at the Inova Conference Center on the campus of The Inova Schar Cancer Center in Fairfax, VA. Attendees enjoyed dinner, entertainment, and door prizes while learning about gene editing therapy and the critical need for blood donations from people of color to support those affected by SCD.
Sickle cell disease causes red blood cells to take on a “sickle” shape, leading to blockages in blood flow and oxygen delivery throughout the body. This can result in extreme pain, respiratory issues, organ failure, and even fatal strokes. Although advancements in newborn screening, immunizations, and treatments like hydroxyurea have improved survival rates, individuals with SCD continue to face acute pain crises and serious health complications.
Adding to the evening’s inspiration, Bennie Herron from the Fatherhood Initiatives with Fairfax County captivated the audience with an uplifting poem that echoed themes of hope, unity, and determination.
Despite progress in care, a national shortage of trained physicians remains a challenge for effective treatment. Events like this town meeting are crucial for fostering community support and ensuring individuals living with sickle cell disease receive comprehensive care.
The INOVA Schar Sickle Cell Center is the only specialized clinic in Northern Virginia dedicated to treating patients with this chronic condition. During the event, Otmar Donald shared his harrowing experience from 2022. He described being rushed to an emergency room in Northern Virginia when he had COVID-19 alongside a painful sickle cell crisis, enduring 13 hours without adequate treatment.
“I tried to advocate for myself,” he recounted. “They let my hemoglobin drop to 4. I told my wife I thought I was going to die there.” After being transferred to Johns Hopkins Hospital for specialized care, he later discovered the INOVA Schar Adult Sickle Cell Center near his home.
“Ever since then,” Otmar said, “my care has been on the up and up. Connecting with Dr. Ershler and Dr. Alan has helped me stay out of the hospital for two years.” He expressed gratitude for the transformative changes in his medical plan that have significantly improved his health.
When asked about the importance of a specialized Adult Sickle Cell Center, Dr. Sheinei Alan, Director of Clinical Research at the Adult Sickle Cell Center stated:
“By creating a medical home that caters specifically to the needs of adult sickle cell patients, we ensure continuous, coordinated care and support that improves health outcomes and reduces the frequency of hospitalizations. We are proud of this advancement and its impact on enhancing the quality of life for those living with sickle cell disease in our community.”
The Inova Schar Adult Sickle Cell Center is located at **8081 Innovation Park Dr., 4th Fl., Skyline Clinic**, Fairfax, VA 22031. If you have a sickle cell crisis, call **571-472-1390** to request a same-day urgent appointment.
