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.

We are halfway through the year, and our AEP sessions are going strong! This month we welcome Alvaro Venegas a Founder,Speaker, and Consultant "Reigniting the Passion in Professionals" to talk about Motivation

Alvaro Venegas, affectionately known as Coach Al, has been cultivating hope in his community since 2007. He began by founding a health and wellness organization that provides inspirational training and personal development to students in schools, teachers, families and military personnel.  He continued to explore methods of serving through public speaking and writing, and has since partnered with many educators and community leaders to impact hundreds of schools throughout California. Now serving on the Washington Unified School District School Board, he is looking forward to continuing his mission of  elevating those who serve in an effort to contribute to a positive and unified culture in this loving community he calls home.

Click here to register to our AEP session

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

Imaging Technique Predicts Risk of Vision Problems
 
By: Forest Ray PhD
 
Rapid and repeated imaging of blood flow through the eyes can inform physicians of a patient’s risk of sustaining eye damage and developing vision problems related to sickle cell disease (SCD), as well as of how effective a given therapy is, a recent study shows. According to researchers, this could enable doctors to make earlier diagnoses, better monitor patients’ overall health, and determine which treatments work best for individual patients.

Click here to read this article

Machine Learning Can Predict Rapid Kidney Function Decline
 
By: Steve Bryson, PhD
 
Machine learning tools can identify sickle cell disease (SCD) patients at high risk of progressive kidney disease as early as six months in advance, a study shows. The study, “Using machine learning to predict rapid decline of kidney function in sickle cell anemia,” was published in the journal eJHaem. Chronic kidney disease is more prevalent in SCD patients, who experience a faster decline in kidney function compared with the general population. As rapid kidney function decline in patients is associated with increased mortality, identifying those at risk early may help with timely use of preventive interventions.

Click here to read this article

Advocates Can Try for Grants Ahead of Rare Disease Week on Capitol Hill
 
By: Patricia Inacio, PhD
 
Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in grants, totaling up to $100,000, the foundation announced in a release. The pre-event Meet and Greet Session, to be held June 8 and 9, brings together regional and state-wide rare disease advocates to interact in virtual games and prize sessions. Registration is available through this link.

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.