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...

03/25/2022

A very worthy listen too about your medical providers… Who is your Advanced Practitioner? Do you know their role in your care? Learn what is happening in the Sickle Cell world!

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.

04/08/2020

SCDAA WEBINAR - WEDNESDAY, 4/8/20
SCDAA's Response to the COVID-19 Pandemic

Join
Dr. Biree Andemariam, Chief Medical Officer
and Dr. Lewis Hsu, Vice Chief Medical Officer
Wednesday, April 8, 2020

6:30 – 7:30 PM Eastern Time (US and Canada)

Join Zoom Meeting

https://zoom.us/j/618396885

Meeting ID: 618 396 885

To join by phone:

+1-646-876-9923 US (New York)
+1-312-626-6799 US (Chicago)

Use Meeting ID: 618 396 885 #
Dial by your location

+1 646 876 9923 US (New York)
+1 312 626 6799 US (Chicago)
+1 669 900 6833 US (San Jose)
+1 253 215 8782 US
+1 301 715 8592 US
+1 346 248 7799 US (Houston)

Meeting ID: 618 396 885
Find your local number: https://zoom.us/u/ac4VL7dOSg

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www.sicklecelldisease.org

02/23/2020

A 28-year-old sickle cell anaemia survivor Musonda Mwilwa has fulfilled her dream of becoming a medical doctor. Mwilwa said she had always wished to be medical doctor even after she was diagnosed with sickle cell anaemia.

01/02/2020

Sad that the voices of those who suffer has been silenced. Sickle Cell is an illness that has been around for years but so many still don't what this illness is. Funding for Sickle Cell is needed and those the survivors of Sickle Cell need to stand up and speak out. 2019 will be a year of change.

03/10/2019

In 2019 let's be intentional about Sickle Cell. Sickle Cell is a silent illness but we need to speak up. A challenge is soon to come. Lets go viral.