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.

Program Objective:
Upon completion of this activity, participants should be able to:
• Increase knowledge about sickle cell & treatments
• Identify current evidence-based practices to improve care of individuals with sickle cell disease
• Identify resources available to caregivers
• Identify treatments & resources available to individuals with sickle cell or chronic blood disorders

Date and Time:
Saturday, October 2, 2021
7:30 PM – 10:30 PM IST

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Join us as we talk about important issues in sickle cell disease at our virtual 8th Annual World Sickle Cell Day Event!

June 19 is World Sickle Cell Day, and we invite you to join us on June 18, 2021 as we delve into topics that affect people with sickle cell disease and their families.

We'll discuss issues such as:
• Mental Health and SCD
• Living Well with SCD
• College life with SCD
• Developments in Gene Therapy

Experts in these topics, as well as SCD Warriors, will share their perspectives and experiences, and then you will be invited to join the conversation!

Date and Time:
Fri, Jun 18, 2021, 11:30 PM – Sat, Jun 19, 2021, 2:00 AM IST

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This Trans–National Institutes of Health (NIH) workshop will focus on sickle cell disease pain. Researchers will explore critical gaps and research challenges as well as brainstorm potential solutions for this grossly understudied pain condition in a highly underserved population. This fits into the NIH mission of seeking fundamental knowledge to enhance health. The meeting planning is being led by the National Center for Complementary and Integrative Health and the National Heart, Lung, and Blood Institute.

Date & Time:
Wednesday, July 21, 2021; 11:30 AM – 5:30 PM
Thursday, July 22, 2021; 11:30 AM – 5:30 PM

This event has ended.

Join Sickle Cell Disease Association of America (SCDAA) for an informative town hall discussion surrounding gene therapy. Hear the questions, answers, misinformation and unknowns about SCD gene therapy from our trusted expert advisors, patients and advocates.

After registering, you will receive a confirmation email containing information about joining the meeting.

Register here!

Date & Time:
Monday, June 28, 2021
6:30 PM – 8:30 PM EST

This event has ended.

A single dose of CTX001, an experimental gene-editing cell therapy, rapidly increases the levels of hemoglobin and prevents vaso-occlusive crises (VOCs) for up to nearly two years in people with severe sickle cell disease (SCD), according to interim data from the Phase 1/2 CLIMB-SCD-121 clinical trial.

CRISPR Therapeutics and Vertex Pharmaceuticals are jointly developing CTX001 for the treatment of hemoglobin-associated diseases, including SCD and transfusion-dependent beta thalassemia (TDT).

These preliminary findings, along with positive interim results from the CLIMB-Thal-111 study (NCT03655678) testing the therapy in TDT patients, were presented at the European Hematology Association 2021 Virtual Congress, held June 9–17.

“We are excited about these results and look forward to additional longer-term data and to moving this investigational medicine forward for a larger population of patients with these two devastating diseases,” Samarth Kulkarni, PhD, CRISPR Therapeutics’ CEO, said in a press release.

August 26, 2021 — The Sickle Cell Disease Association of America Medical and Research Advisory Committee reminds the sickle cell community that the COVID-19 pandemic is not over and that news is moving quickly in many areas.

MARAC recommendations are making a minor shift to emphasize a more individualized approach:

• Continue to recommend vaccination against COVID. For booster dose of vaccine, currently SCD is not eligible but expect changes in CDC guidance.
• Continue to recommend general precautions: wearing masks, keeping physical distancing, good ventilation, and washing hands. These are public health measures.
• Recommend neutralizing monoclonal antibodies (mAb) – (Regeneron) as early treatment for mild symptomatic COVID in individuals with SCD [<10d after the test, age 12y+, wt 88 lb+ (40kg+), not hospitalized, not newly on oxygen]. Encourage getting tested if you have COVID symptoms. Possible prophylactic treatment with Regeneron antibodies if exposed to COVID.
• No general recommendation for all individuals with SCD to stay home nor all to return to in-person activities. Help patients and families make individualized assessments of risk and trade-offs of returning to work or school in-person. Factors to consider were listed in MARAC July 2020 “checklist for return to school” (plus vaccination status): the community’s rates of COVID and variants, vaccination status, family socioeconomic situation, ventilation and other protective measures in the building, mental health needs, educational needs.

Read the full statement for more information on the above.

In 2021, we are celebrating 50 years as a viable voice and supporter for the Sickle Cell Community. We would love for you to join us at our Annual Golf Outing! The outing has always been one of the organization's largest fundraisers. The 19th outing will include 18 holes of golf, lunch, dinner, raffles and more. Golfing categories include Men's and Women's flights. Prizes are awarded for low gross, longest drive and closest to the pin. Register to join us!

Registration Details:

Monday, September 13, 2021

Odyssey Golf Club, Tinley Park, IL, USA

Tammy Smith's daughter, Precious, often got sick as a baby and she cried—a lot.

It wasn’t until Precious became so sick and nearly died that Tammy took her to a different hospital for treatment and learned that Precious had sickle cell disease (SCD). The inherited blood cell disorder causes red blood cells to morph into a crescent (“sickle”) shape and get stuck in small blood vessels. This blockage inhibits blood flow, which deprives tissues of oxygen and causes severe pain and tissue damage.

Precious received her first blood transfusion at the age of two. It was the beginning of many stays in the hospital that would prove isolating and difficult for the young family.

Here are the details of 9th Annual Walk for Sickle Cell organized by Precious Organization:

When:

Saturday, September 18, 2021

Where:

Rock Spring Park, 2116 College Ave.

Alton, IL, USA

August 26, 2021 – The Sickle Cell Disease Association of America Medical and Research Advisory Committee has released a statement with updated COVID-19 guidance.

MARAC recommends that people with sickle cell disease should have access to monoclonal antibody (mAbs) treatment according to established guidelines, to prevent mild COVID from progressing to severe disease.

Read the full recommendations for providers, policy makers and patients.

The Sickle Cell Foundation of Georgia, Inc. is pleased to announce that the Sickle Cell 5k Race/Walk will take place in person on Saturday, September 11, 2021, in beautiful downtown East Point on a new 5K route.

Registration starts at 7 AM and the race/walk kicks off at 9 AM from East Point City Hall, 2757 East Point Street, East Point, GA.

“We are excited to have the Sickle Cell Race/Walk return to the City of East Point and support the invaluable services of Camp New Hope,” said Mayor Deana Holiday Ingraham. “This is the first year that runners and spectators will start the race in front of our new City Hall. This will help ensure that participants continue to have the opportunity to experience our downtown growth, convenient transit, neighborhood charm, hospitality, and robust businesses.”