The Winter Wonderland Virtual holiday event will take place December 16, 2023. We would like to thank all of our families who have signed up to participate in this celebration of our warriors and their accomplishments. We look forward to having fun with you all.
Local Community based organizations including SCWB has worked closely and diligently with vertex pharmacutical representatives, and many others to push for the passing of bill A2609-a / S1839-a - The Sickle Cell Disease Detection and Education.
The Bill made its way to Governer Kathy Hochols office earlier this week and with all of the written letters of support that was sent to Kathy and her team we were able to get Gov. Kathy Hochul to sign bill A.2609-a/S.18390-a - NY Sickle Cell Disease Detection and Education Program - into law 12/08/2023.
This is amazing news for the Sickle Cell community.
Read more at Governor Hochul Signs Legislation to Improve Health Care Access for New Yorkers | Governor Kathy Hochul (ny.gov)
In other great news, the FDA Approves First Gene Therapies to Treat Patients with Sickle Cell Disease.
The U.S. Food and Drug Administration approved two milestone treatments, Casgevy and Lyfgenia, representing the first cell-based gene therapies for the treatment of sickle cell disease (SCD) in patients 12 years and older. Additionally, one of these therapies, Casgevy, is the first FDA-approved treatment to utilize a type of novel genome editing technology, signaling an innovative advancement in the field of gene therapy.
Photos from the 5th Annual Sickle Cell awareness walk. Shout out to the photographer at L.O.V productions.
December wellness Tips
December can be the most Wonderful time of the year and also the most stressful time of the year. The Holidays can cause extra stress. However, There are ways to ease your stress during this time of the year. Here are a few tips for a managing stress.
Our last transition program meeting for the year will take place 12/12/2023 6pm- 7:30pm at East high school or via zoom. The topic for the meeting will be Goal setting for a healthy winter season. We will also be providing more information on Sickle cell speaks and the new Gene therapy treatments.
This meeting marks our 6 month Anniversary for the transitions program. Surveys for the program will be emailed to participants by the end of December.
Thank you for participating in this program. We look forward to the upcoming new year with you all!
The Sickle cell Monthly support group will take place December 21st, 2023. Same time and location as Transitions program. We look forward to you all participating.
Stay up to date with Next years events and programs by subscribing to our site today!
Have a wonderful Holiday Season :)
Comentários