World Sickle Cell Day events include walks, vigils, building lights
Theme for June 19 is 'Global Action, Local Impact'
From illuminating public buildings in red to candlelight vigils and walks, supporters are gearing up to raise awareness and increase public knowledge about sickle cell disease (SCD) on June 19, World Sickle Cell Day.
This year’s global theme is “Global Action, Local Impact: Empowering Communities for Effective Self-Advocacy.”
SCD affects millions of people worldwide, including more than 100,000 individuals in the U.S. There is no universal cure, and even though some treatments are approved for the condition, health risk factors and costs limit their availability for patients.
“We are in a moment of real progress with advances like gene therapy and bone marrow transplants offering new hope to people living with sickle cell disease — transformative treatments that can significantly reduce complications and improve quality of life,” Sophie Lanzkron, MD, director of the hematology division at Thomas Jefferson University in Philadelphia, said in a press release from Shine the Light on Sickle Cell.
At the same time, Lanzkron said, “we must also recognize the barriers — cost, access, and the need for lifelong care.” Sickle cell treatments are “complex therapies that require support and informed decision-making,” she said.
Shine the Light campaign returns
The Shine the Light campaign organized by SiNERGe, a coalition of community-based organizations and medical providers from across the Northeast, aims to illuminate landmarks, stadiums, and public buildings in red, the symbolic color of SCD.
“We invite you to join with friends, family, neighbors and others in your community, as people around the nation and across the globe, host and hold local gatherings to shine the light on sickle cell disease,” the campaign says on its website. “Together, we must and will find a universal cure for sickle cell disease!”
Campaign organizers have provided a flyer and other resources in English, Spanish, and French, and call for people to organize and engage their local communities in various events, most of which are free to attend. These include educational sessions, blood drives, candlelight vigils, walks, and 5Ks, that will take place throughout June.
The Sickle Cell Disease Association of America (SCDAA) is also offering ways to participate in awareness events, including the Summer Sickletini Happy Hour, which will be held on June 19 in Baltimore. The event will offer guests the opportunity to connect and support families affected by SCD, in addition to light bites and entertainment.
Other community events include:
- Sickle Cell Week, June 14-19 in Birmingham, Alabama, hosted by the SCDAA Central Alabama Chapter. It includes walks, a cooking demonstration, and health and wellness fairs, among others.
- A Juneteenth Block Party with A Sickle Cellabration, hosted by the Sickle Cell Association of New Jersey. It will be held on June 19 in Newark, and includes activities like painting, book readings, and Juneteenth games.
- The 29th Annual Sickle Cell 5K Walk/Run, June 21 in Indianapolis, hosted by Martin Center Sickle Cell Initiative.
- A bowling fundraiser on June 21, in Tinley Park, Illinois, hosted by the Sickle Cell Disease Association of Illinois.
- The 7th Annual Education Day, June 21 in Pikesville, Maryland, hosted by the Maryland Sickle Cell Disease Association.
The Global Alliance of Sickle Cell Disease Organizations and Cayenne Wellness Center will host a 24-hour virtual awareness event on June 19, uniting people across time zones to discuss innovative solutions and best care practices for SCD management and support for SCD awareness, research, and policy changes.
Meanwhile, St. Jude Children’s Research Hospital in Memphis, Tennessee, is recognizing World Sickle Cell Day by highlighting its sickle cell program, one of the nation’s largest.
In the U.K, the Central London Community Healthcare NHS Trust will host Sickle Cell Awareness Day activities on June 19, inviting people to wear red and participate in activities like education around pain management.
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