Citizens for Quality Sickle Cell Care SCDAA-Northern Chapter Inc. (CQSCC)

05/09/2026

21-year-old Sebastien Beauzile from Long Island makes history as the first New York patient declared disease-free from sickle cell disease. Doctors repaired his own stem cells in a lab and returned them to his body. At Cohen Children's Medical Center, physicians used Lyfgenia gene therapy to extract Sebastien's stem cells, fix the genetic defect that causes sickling, and infuse the corrected cells back into his bone marrow. His body now produces healthy red blood cells instead of the painful, sickled ones that defined his childhood.

This breakthrough offers hope to the 100,000 Americans living with sickle cell disease, a condition that disproportionately affects Black communities. For families who have watched loved ones endure excruciating pain crises and frequent hospitalizations, Sebastien's cure represents the future they have been waiting for. Comments from grandparents celebrating their own family members' successful treatments show this is not an isolated miracle but the beginning of accessible gene therapy changing lives across the community.

Share this story with every family touched by sickle cell disease. Real cures are happening right now in our lifetime, and every person deserves to know that hope has a name and a face in 2024.

01/27/2026

PAID SURVEY

If you’re a US-based family impacted by SCD, you can take part in an IRB-approved research study to better understand the overall experiences of patients and families who have undergone gene therapy or HSCT. If you complete the approximate 30-minute survey and a 60-minute follow-up interview, you’ll receive $200. Click this link for the Survey.

SelectSurvey.NET ClassApps LLC

12/23/2025

Things are changing! We are now a support group based in the Greater Hartford region. We exist to share information and resources, collaborate, support, and uplift! We are here FOR YOU!

05/22/2025

https://www.sicklecelldisease.org/get-involved/events/annual-national-convention/

We are excited to share that our 53rd Annual National Convention will be held on October 15-18 at the Loews-Chicago O’Hare Hotel in Rosemont, Illinois! SCDAA’s Annual National Convention fosters the exchange of the latest scientific and clinical information through innovative training seminars and educational workshops, interactive panel discussion, advocacy lectures and special events. Mark your calendars and stay tuned – more information and registration is to come!

ABSTRACT ANNOUNCEMENT: 2025 Competition Opens on May 14. Learn more. We are excited to share that our 53rd Annual National Convention will be held on October 15-18 at the Loews-Chicago O’Hare Hotel in Rosemont, Illinois! SCDAA’s Annual National Convention fosters the exchange of the latest scien...

11/11/2020

Join Rufifn Neuro Lab tonight @ 7PM with Ms. Lizzy Urbina to talk about
Exposure to oxytocin in adolescence: A possible treatment for addiction. Click the link below to register.

Welcome! You are invited to join a meeting: Ruffin NeuroLab Research in Progress. After registering, you will receive a confirmation email about joining the

11/09/2020

We welcome all PLN parent leaders and members to gain information and support, provide input, share strategies and build our movement on the PLN monthly meeting.