The Sickle Cell for Long Island Initiative Group, founded by Fatima Perry in October 2025, a mother to a daughter with sickle cell anemia SS, was created with a clear and urgent purpose: to bring together a dedicated community committed to improving the lives of those affected by Sickle Cell Disease across Long Island. Despite advances in medicine, there remains a significant gap in treatment updates, comprehensive care, transition support, and accessible education for patients and families in our region. This initiative seeks to close those gaps.

 

Our group—made up primarily of women and open to all who are passionate about Sickle Cell in any way, whether living with the disease, caring for someone with it, lost someone to the disease, or having guided patients and families through its challenges—stands united in advocacy, empowerment, and action.

 

We strive for meaningful advancement in care, expanded resources, and a stronger support network. Most importantly, we aim to shift the spotlight onto Sickle Cell Anemia, beginning right here on Long Island, where increased awareness and coordinated community efforts are long overdue.

 

Together, we are building a movement of education, visibility, and hope—one that uplifts every voice touched by Sickle Cell Disease