Hello Sickle Cell Warriors, Welcome to our new e-newsletter! Throughout the year, we will be sending this newsletter to you on a biweekly basis. We are glad to be writing to you and hope you find this interesting.

Thank you, Victor Reynolds, for an informative presentation! Great information on self-identity and really making sure you STAY or become MOTIVATED to achieve your goals! Making sure that our PAST doesn't dictate YOUR FUTURE! and to form a new identity you have to be the "YOU" that you always wanted to be!

Advocacy & Empowerment Session
June 12th, 2021 at 11 AM PST
 
Don't know what Advocacy and Empowerment is? OR wanting to know what our is? Check this out below!
 
Do you know anyone or does someone in your family have 
Sickle Cell Disease (SCD)?
Are you a caregiver or advocate?
 
The Advocacy and Empowerment Program is created for all stakeholders: clients & families, caregivers, medical students, medical professionals, and advocates. It is designed to explore advocacy and educate to be empowered. 
 
The Advocacy and Empowerment Program consists of one 3 hour webinar designed to empower attendees with core educational content on SCD (Sickle Cell Disease); pain management; emergency preparedness, and the exploration of self-advocacy.
 
There will be a variety of presenters’ clients, nurses, physicians, medical professionals, and business professionals sharing and discussing important issues that affect the sickle cell community. It is SCAA's hope that these sessions will help to create a clearer understanding of all the stakeholders' roles as we develop a better perception.
 
 Due to COVID-19 all of the sessions will be conducted thru Zoom video conference until such time we can meet in person. The sign on information will be sent to you through Evite. You will also receive a recording of the zoom session.

Click here to learn more about our AEP sessions

News from our Sickle Cell Community

Gene Therapy ARU-1801 Showing Early Efficacy, Safety in Phase 1/2 Trial
 
By: Aisha I Abdullah PhD, PhD
 
ARU-1801, an experimental gene therapy for sickle cell disease (SCD), lowered the number of vaso-occlusive crises and led to  blood cells producing fetal hemoglobin in a first group of three treated patients, according to data from an ongoing Phase 1/2 trial.Favorable safety is also being seen, with two of these patients two years post-treatment at the time of this analysis and the third up to 10 months out.

Click here to read this article

Oxbryta Safe and Effective in Children Ages 4 to 11, Early Trial Data Indicates
 
By: Marta Figueiredo, PhD
 
Six months of treatment with Oxbryta (voxelotor) safely and effectively increased hemoglobin levels and reduced red blood cell destruction, or hemolysis, in children ages 4–11 with sickle cell disease (SCD), according to data from the ongoing Phase 2 HOPE-KIDS 1 trial.

Click here to read this article

Non-viral Gene Editing of Marrow Stem Cells Shows Potential in Early Study
 
By: Steve Bryson, PhD
 
A non-viral, CRISPR-based gene-editing tool showed a potential to reverse mutations that cause sickle cell disease (SCD) by successfully editing genes in stem cells within the bone marrow of mice.Data from this proof-of-concept study also found that changes in stem cell genes were sustained for more than one year after a single course of treatment.“This new data supports the possibility of delivering a safer solution to treat blood disorders, including sickle cell disease, by avoiding the need for bone marrow transplantation,” John Leonard, MD, president and CEO of Intellia Therapeutics, the technology’s developer, said in a press release.

Click here to read this article

 
Be on the lookout for our bi-weekly newsletters! The beginning and end of every month.
 
Check out our SCAASF website for upcoming events, blood drives, etc.
 
Check out our Facebook, Twitter, and Instagram where we post upcoming events and the latest news.
 
If you've missed previous AEP sessions or haven't check out our YOUTUBE Channel don't forget to do and subscribe to our channel can continue growing and spreading awareness to the general public as well as having the Sickle Cell community voices heard.