Attendance was robust at the inaugural Sickle Cell Information Forum presented by Sickle Cell For Long Island at the Uniondale Public Library to bring comprehensive education and community advocacy together.
The Nov. 22 event drew families, healthcare providers and local residents eager to learn more about sickle cell disease.
SCLI founder Fatima Perry whose daughter Imani Jackson was diagnosed with sickle cell anemia at just six weeks old — began with a heartfelt call to action: “Our mission is to support youth as they transition and navigate into adult care while living with SCD. I am passionate about empowering families and strengthening community support systems.”
She invoked the message of ‘each one” teach one” underscoring the group’s purpose of building community and resources across Long Island.
Perry introduced Jackson, who served as the event’s emcee, endures SCD and is pursuing a master’s degree in public health. She emphasized the need for increased visibility and understanding.
“We want to break down barriers and make support accessible for everyone affected by sickle cell disease,” Jackson said.
Pediatric hematologist-oncologist Dr. A.O. Appiah-Kubi, of Northwell Health, provided an overview of the disease and cell traits, noting that it affects roughly 100,000 Americans, primarily African Americans.
“Early diagnosis and a close partnership between families and care providers are essential to managing this disease effectively,” she said.
Sickle cell disease is an inherited blood disorder that affects the red cells that form into the shape of a C, resulting in a shortage of red blood cells, pain and other serious health complications.
Jordan McDowell, from Vertex a group that provides education on the disease, discussed the gene therapy treatment Casgevy, which uses a patient’s own blood stems to boost healthy hemoglobin production. The therapy offers hope for reducing complications and improving long-term quality of life.
Dr. Ron Jacobs from NMDP, a bone marrow donor himself urged healthy adults to join the stem cell registry. NMDP is considered a leader in bone marrow and stem cell transplant.
“We especially need donors between ages 18 and 35,” he said, “Donors could be someone’s best hope for a cure.” He stressed the urgent need for ethnic and racially diverse donors to improve match chances and save lives
The forum also featured a Sickle Cell Panel and a Caregiver Panel. Adults living with SCD spoke candidly about the physical, mental and emotional challenges of the disease, sharing stories of hospitalizations and daily struggles and resilience.
“Sickle cell is a part of me, but it does not define me,” a panelist said. “I refuse to give up.”
The caregiver panel made up of parents, nurses and mentors highlighted the love sacrifice and advocacy required to support individuals with SCD, offering the realities of what families face.
During the Q&A session attendees asked about gene therapy and the ongoing lack of public awareness about sickle cell disease. Speakers said forums like this are vital first step and encouraged the community to continue spreading the word.
Perry retuned to the podium and thanked attendees for their participation and expressed hope that they leave ‘informed, uplifted and empowered to take charge of their health, their voice, and their journey.” She encouraged the community to stay engaged and connected as SCLI works to expand local resources and awareness.”
For more information, contact Sickle Cell For Long Island Initiative Group at Sclongisland@outloook.com or the group’s social media platforms.
