Supporters gearing up to raise awareness for SCD in September

'Sickle Cell Matters 2023' is theme of this year's SCDAA campaign

Jacob Harney, PhD avatar

by Jacob Harney, PhD |

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Advocates, patients, caregivers, doctors and others impacted by sickle cell disease (SCD) are gathering in September to bring attention to the struggles and needs of those living with the condition, and the importance of research and developing treatments.

National Sickle Cell Awareness Month was established 40 years ago by President Ronald Reagan to call attention to the most common inherited blood disorder in the U.S. The Sickle Cell Disease Association of America (SCDAA) is spearheading this year’s event under the theme, “Sickle Cell Matters 2023.”

“Individuals and organizations can join our efforts to bring attention to sickle cell disease by engaging elected officials for proclamations, hosting awareness events, distributing educational information to dispel the myths about sickle cell disease, and lighting public spaces, buildings and landmarks red!,” the SCDAA stated in a webpage for the event.

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The organization is inviting people to “Show Love, Give Blood for Sickle Cell Awareness Month 2023” by joining a virtual blood drive to support sickle cell warriors. While blood transfusions are one of the most critical treatments for patients, less than 10% of Americans donate and only 5% are of African ancestry, according to the American Red Cross.

The National Heart, Lung, and Blood Institute (NHLBI) makes available patient handouts, social media resources, inspiring stories, drop-in articles, ongoing clinical trials, and gene therapy information available. It encourages advocates and patients to join the Blood Diseases & Disorders Education Program to raise awareness about SCD.

Similarly, the SCDAA is offering an Awareness Month Flyer & Facts Sheet, a social media toolkit, and a Clinical Trial Finder, that’s available as a mobile app for Apple or Android devices. Trivia fans are encouraged to visit SCDAA’s social media pages each Friday in September for a sickle cell-themed question.

The Sickle Cell Disease Foundation will provide resources for patients, including general information on SCD, child care, medical and healthcare, and some city, state, and federal resources.

The Cayenne Wellness Center, a nonprofit that educates families about SCD, and Axis Advocacy, an organization working to improve the lives of patients and caregivers, will co-host the 15th Annual Sickle Cell Disease Educational Summit on Sept. 13-16, in person and virtually, to discuss available and future treatments, as well as the importance of newborn screening, self-care, and more.

The Nationwide Children’s Hospital will post important information about SCD on FacebookTwitter, and Instagram throughout September. Patients can also learn about the Nationwide Children’s Comprehensive Sickle Cell and Thalassemia Program.

The SCDAA is also encouraging supporters to join it for social parties on Sept. 18, 20, and 22. The organization will partner with advocacy, corporate, and federal organizations to share victories and exciting information about the latest happenings in the sickle cell community.

Every year, SCDAA member organizations across the country host events to bring the community together.

In Baltimore, Maryland, the 10th annual SCDAA Walk with the Stars, presented by Pfizer, will happen Sept. 16 at Rash Field Park. People can join in person or participate in the virtual fundraising campaign. The hashtag #MoveForSickleCell has been set up to help spread the word about the event.

In Illinois, the SCDAA chapter will host its 49th Annual Walk/Jog/Bike-A-Thon on Sept. 23, at Hayes (Francis) Park in Chicago. Registration for participants age 5 and older is $30 and includes an event T-shirt.

A number of local SCDAA events are also scheduled throughout the U.S.

The Sickle Cell Foundation of Minnesota has several events planned, including “The Great Minnesota Get Together” over Labor Day weekend (Sept. 3-5) at the Minnesota State Fair.

In the U.K., Gideon’s Treasure Foundation won’t be holding its gala this year, but it will host a weekly podcast Sickle Cell Disease News readers can visit.

“’Sliving with Sickle Cell’ is dedicated to sharing the incredible stories of people overcoming challenges and thriving with Sickle Cell,” Barbara Biosah, Founder of Gideon’s Treasure Foundation, wrote in an email to Sickle Cell Disease News.