‘Sickle Cell Matters’ during Sickle Cell Awareness Month

The sickle cell disease (SCD) community will mark National Sickle Cell Awareness Month through September to help bring greater visibility to the inherited blood disorder and the roughly 100,000 U.S. residents affected by it.

The campaign also seeks to raise funds for research and support those with SCD and their families. In the U.S., the disease impacts about 1 in every 365 African-American births. The Sickle Cell Disease Association of America (SCDAA) will mark the event under the theme “Sickle Cell Matters 2024,” and advocates and supporters hope to raise awareness among lawmakers, industry representatives, public authorities, researchers, health professionals, and the general population.

“We encourage everyone to be a part of this annual effort to increase awareness about sickle cell disease and sickle cell trait during the month of September,” the organization states on its awareness month webpage. “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 organization is also offering facts and statistics that can be shared, along with a flyer and fact sheet, and a social media toolkit with sample posts. The SCDAA is also presenting its “Show Love, Give Blood” virtual blood drive to support SCD warriors. Blood transfusions are among the most crucial treatments for sickle cell patients, but African Americans make up just 5% of American Red Cross donors despite totaling 13% of the population.

On Sept. 23, 25, and 27, the organization is encouraging supporters to join it on X for social parties where it will partner with advocacy, federal, and corporate entities to share news about the latest SCD community developments. Also, an SCD-themed trivia question will be featured every Friday in September on the SCDAA’s social media platforms.

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A list of the month’s awareness events

This year’s awareness and community-building events by SCDAA member organizations include:

• Sept. 3, Columbia, South Carolina: Every Drop Counts Blood Drive, James R. Clark Memorial Sickle Cell Foundation
• Sept. 7, Brooklyn Park, Minnesota: Sickle Cell Cell-ebration of Hope, Sickle Cell Foundation of Minnesota
• Sept. 7, New Castle, Delaware: Transformative Curative Gene Therapy Transplant for Sickle Cell Anemia, Tova Community Health
• Sept. 14, Daytona Beach, Florida: Celebrating Sickle Cell Awareness Month, Sickle Cell Medical Advocacy
• Sept. 14, Kansas City, Kansas: 14th Annual Fun Walk, Uriel Owens Sickle Cell Disease Association of the Midwest
• Sept. 14, Baltimore, Maryland: Maryland Sickle Cell Disease Association picnic
• Sept. 14, Detroit, Michigan: Annual Sickle Cell Matters Awareness Walk, SCDAA Michigan chapter
• Sept. 14, St. Louis, Missouri: Sickle Cell Stroll, Sickle Cell Association of St. Louis
• Sept. 14, Portland, Oregon: 12th Annual Sickle Cell Walk for Awareness & Community Marketplace, Sickle Cell Anemia Foundation of Oregon
• Sept. 14, Columbia, South Carolina: 18th Annual Sickle Cell Walk, James R. Clark Memorial Sickle Cell Foundation
• Sept. 21, New Haven, Connecticut: Walk Run Bike, Sickle Cell Disease Association of America, Connecticut
• Sept. 21, St. Petersburg, Florida: Sickle Cell Dinner & Musical Extravaganza, SCDAA St. Petersburg chapter
• Sept. 21, Atlanta, Georgia: Sickle Cell Family Skate Night, Sickle Cell Foundation of Georgia
• Sept. 21, Atlantic City, New Jersey: Erick Bradley Sickle Cell Disease Awareness Walk, Sickle Cell Association of New Jersey
• Sept. 21, Houston Texas: Sickle Cell Houston’s Amazing Walk 5K/1K, Sickle Cell Association of Houston
• Sept. 22, Dothan, Alabama: Annual Sickle Cell Walk-A-Thon, Southeast Alabama Sickle Cell Association
• Sept. 26, Alexandria, Louisiana: Tailgating for Sickle Cell, Sickle Cell Anemia Resource Foundation
• Sept. 26, Portland, Oregon: 8th Annual Sickle Cell Live! Awareness Dinner, Sickle Cell Foundation of Oregon
• Sept. 28, Chicago, Illinois: Walk, Jog, Bike 5K/1K, Sickle Cell Disease Association of Illinois
• Sept. 28, Trenton, New Jersey: 5th Annual 2K Color Fun Walk, Sickle Cell Association of New Jersey
• Sept. 28, Lancaster, South Carolina: Free Family Fun Day, James R. Clark Memorial Sickle Cell Foundation
• Sept. 28, Norfolk, Virginia: Walk for Sickle Cell, Sickle Cell Association.

“Now’s the time to unite on behalf of the more than 100,000 Americans who live with sickle cell disease, many of whom suffer in silence,” Regina Hartfield, SCDAA’s president and CEO, told Sickle Cell Disease News in an email. “Join the Sickle Cell Disease Association of America and sickle cell warriors everywhere in September as we celebrate the progress we’ve made and spotlight the work that still needs to be done to find a universal cure for all those who live with this disease.”

Elsewhere, the National Heart, Lung, and Blood Institute, which offers a Blood Diseases & Disorders Education Program to increase awareness about disorders such as SCD, is observing the month by providing sickle cell fact sheets in English and Spanish, along with social media resources with sample graphics and posts, virtual meeting backgrounds, and shareable educational articles. Supporters may also read inspiring stories about those living with SCD, and learn about clinical trials.

On Sept. 21, the Sickle Cell Disease Foundation will present the free “End of Summer Jam: Sickle Cell Strong Walk & Reunion” at Azusa Pacific University in Azusa, California. The family-friendly event will feature games, music and entertainment, and food.

Meanwhile, the California-based Cayenne Wellness Center, an SCDAA member that works to improve the quality of life of those with sickle cell and their families, is offering a number of meetings and events in September, including an “SC101” educational session on Sept. 4, a Loma Linda, California SCD support group meeting on Sept. 12, and an “Ask the Expert” event on Sept. 13.

Cayenne’s 16th Annual Education Summit is set for Sept. 18-21 in Los Angeles. The hybrid in-person and virtual event targets the entire sickle cell community and will address aspects of the disease, including pipeline treatments, incarcerated care, newborn screening, and advocacy.

Focus on sickle cell trait

Ohio’s Nationwide Children’s Hospital, which offers a Comprehensive Sickle Cell and Thalassemia Program, is encouraging people to follow it through September on Facebook, X, and Instagram for information about sickle cell. One topic covered will be the sickle cell trait, which is thought to affect between 1-3 million U.S. residents, some unknowingly.

“Millions of people do not know they have sickle cell trait, because the trait usually does not cause illness,” the hospital states on a webpage. “That’s why it’s important to be tested. If you and your partner both have sickle cell trait, there is a 25% chance with each pregnancy that your child could be born with sickle cell disease.”

The Sickle Cell Foundation of Georgia will present its 44th Annual Sickle Cell Race/Walk on Sept. 14 in East Point, an event that includes an evening concert followed by a candlelight vigil.

The Sickle Cell Disease Coalition, established by the American Society of Hematology in 2016 to amplify members’ voices, foster collaboration, and improve clinical outcomes with SCD,  provides sickle cell education and awareness tools to stakeholders globally.