This summer, 34-year-old Victoria Gray became the first person in the U.S. to have a gene editing therapy as treatment for sickle cell disease. “It’s a very big deal for me,” Gray said in a national media interview after learning the groundbreaking treatment was working. “It’s the change I’ve been waiting on my whole life.”

Gray, a Black wife and a mother of three from Mississippi, had been living with the complications of the inherited blood disorder that disproportionately affects African Americans for her entire life.

CRISPR is a new technique that involves cutting out a tiny piece of the mutation or defective gene that causes sickle cell disease in the hopes that the corrected gene will then work to make normal hemoglobin (a protein in red blood cells) instead of the sickle-shaped hemoglobin that gives the disease its name.

Learning Objectives:

• Understand how COVID-19 impacts individuals with sickle cell disease (SCD) compared to other those who do not have sickle cell disease

• Does COVID-19 increase the risk of venous thromboembolism among individuals with SCD

• Risk factors for severe COVID-19 illness for individuals with SCD

Speaker:

Dr. Ashima Singh

Assistant Professor in the Department of Pediatrics

Medical College of Wisconsin

Date and Time:

April 21, 2022 (Thursday)

01:00 PM in Central Time (US and Canada)

This event has ended.

The Sickle Cell Disease Association of America (SCDAA) partnered with Phi Beta Sigma Fraternity Inc. to increase awareness about sickle cell disease and raise funds to support education about the negative effects of sickle cell disease on the physical, economic and social well-being of individuals with the condition.

“SCDAA is excited to again partner with the Phi Beta Sigma Fraternity, and we are honored to have been chosen as a recipient of their donations,” said Regina Hartfield, President and CEO of SCDAA. “Phi Beta Sigma is deeply committed to serving and supporting the community, as is SCDAA. Their support will go far to benefit those living with sickle cell disease.”

The partnership will support the SCDAA and sickle cell community through raising funds, mobilizing blood and bone marrow drives, and collaborating to educate the community about sickle cell disease and sickle cell traits. 

Welcome to 2023 Celebrating a Second Chance at Life Survivorship Symposium! A week packed full of information, inspiration and community. Learn from our distinguished panel of speakers how to manage the many medical, psychosocial and physical challenges that can arise after transplant.

Please complete the registration below to gain access to all the live and recorded events during the symposium. If more than one person in your household will attend the symposium, please have each person complete a separate registration.

Date:

April 29, 2023 – May 5, 2023

Click Here to Register

Join Carla Lewis, CEO of Kids Conquering Sickle Cell Disease Foundation and Rae Blaylark, CEO of Sickle Cell Foundation of Minnesota for the Empowered Caregivers Forum.

Host Carla Lewis and Rae Blaylark are mother’s of children born with sickle cell disease. We welcome you to join a forum created to support, educate and share resources with parents/caregivers of a child/children or young adult with sickle cell disease/ trait or thalassemia. The forum will provide a safe place for parents to share & ask questions bridging the gap to important conversations.

Dates & Times:

Session I: Sickle Cell Disease & Sickle Cell Trait: What Should We Know?

April 23, 2022

7:00AM PT / 9:00AM CT / 10:00AM ET

Session I has ended.

Session II: Silent Damage and Impact on the Kidneys

July 23, 2022

7:00AM PT / 9:00AM CT / 10:00AM ET

Session II has ended.

Session III: Life After Gene Therapy & Stem Cell Transplant

October 8, 2022

7:00AM PT / 9:00AM CT / 10:00AM ET

Click Here for Registration Link

This event has ended.

Have you experienced barriers to care in the emergency department? In recognition of World Sickle Cell Day on June 19, the Centers for Disease Control and Prevention is:

• Raising awareness of the barriers people with sickle cell disease face when they come into the emergency department with severe pain, and:

• Highlighting ways emergency providers might improve the quality of care they provide.

Support their efforts by sending them a selfie and finishing one or more of the following statements:

• I like when ED providers…

• If I could change one thing about the care provided to people with sickle cell in the ED, it would be…

• When I have to go to the ED for treatment, I feel…

• One of the things I do in the ED to help manage my pain is…

• When I’m in the ED, I miss out on…

• Or create your own!

The Sickle Cell Foundation of Georgia, Inc. (SCFG), in collaboration with the Georgia Department of Public Health and Morehouse School of Medicine will host a series of free provider seminars beginning in April through July 2022.

Leading the virtual seminars will be James Eckman, MD, Professor Emeritus, Emory University School of Medicine; Otis Powell, MD, Primary Care Provider and SCFG Medical Director, and Jeanette Nu'Man, MEd, Operations Director, SCFG.

The unpredictable and persistent nature of the pain and other complications associated with sickle cell disease (SCD) often poses a difficult challenge for healthcare providers, especially for those unfamiliar with treating people with this disease.

Each virtual session will take place via Zoom. Register online at: https://sicklecellga.org/provider-training/

Date & Time:

Part 1:                                                            

April 8, 2022; 10:00 AM – 12:00 PM

May 20, 2022; 2:00 PM – 4:00 PM

June 24, 2022; 4:00 PM – 6:00 PM

Part 2:

April 29, 2022; 10:00 AM – 12:00 PM

June 10, 2022; 2:00 PM – 4:00 PM

July 1, 2022; 4:00 PM – 6:00 PM

This event has ended.

We kick off our celebration recognizing world-renowned jazz artist Miles Davis. He struggled with health issues – arthritis, hip-joint problems and pneumonia – but wasn’t diagnosed with sickle cell disease until middle age. He began playing the trumpet at age 13 and at 18 convinced his parents to allow him to move to New York City to study at the prestigious Juilliard School.

It was a ploy so he could jam with the musical masters of his day and join the band of his idol, Charlie Parker. He was soon leading his own projects and bands, solidifying a career that spanned decades. His album “Kind of Blue” is one of the most successful and influential jazz albums in history. He passed away in 1991, but his music lives on. Take some time to listen to his music today and pay tribute to this influential sickle cell warrior.

In January, The American Red Cross reported that it was facing “its worst blood shortage in over a decade” amid surging cases of the Omicron COVID-19 virus. For the first time since its inception, the Red Cross declared a “Blood Crisis”, with blood and platelet donations reaching critically low levels.

Among the patients in dire need of blood transfusions such as accident victims and cancer patients are patients with sickle cell disease. Approximately 100,000 cases of sickle cell disease have been recorded in United States, and the current blood shortage could prove dangerous to those affected.

Edward Ivy, MD, MPH, Vice Chief Medical Officer of the Sickle Cell Association of America (SCDAA), spoke of the implications of the blood shortage for patients with sickle cell disease in a wide-ranging interview with HCPLive.

In an interview with HCPLive®, Edward Ivy, MD, MPH, Vice Chief Medical Officer, Sickle Cell Disease Association of America (SCDAA), addressed the important elements currently at work in the field of Sickle Cell Disease (SCD) from the blood shortage the nation's facing, to future treatments for the disease.

Ivy has a comprehensive perspective on the topic. In addition to being an MD and obtaining a Master of Public Health, Ivy is an individual living with sickle cell disease. He has first hand knowledge of how difficult it can be to get quality care as a patient. "We can do better, we can treat diseases better in the United States," Ivy said.