Supporters set to shine ‘the light’ June 19 for World Sickle Cell Day

Theme this year is 'Hope Through Progress: Advancing Care Globally'

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by Mary Chapman |

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Dozens of red awareness ribbons come out of a megaphone.

Note: This story was updated June 17, 2024, to correct that “Shine the Light on Sickle Cell” is a SiNERGe campaign independent of the Sickle Cell Disease Association of America.

The theme of this year’s World Sickle Cell Day is “Hope Through Progress: Advancing Care Globally” and supporters are all set to help bring attention to sickle cell disease (SCD), an inherited blood disorder that’s estimated to affect more than 100,000 U.S. residents and 20 million people globally.

Along with raising awareness and funds to support patients, families, and SCD research, the June 19 observance is designed to help lawmakers, public authorities, industry representatives, scientists, healthcare representatives, and the general public better understand the condition and the challenges it causes.

“We believe that by coming together, through our amplified voices, we will raise awareness, reduce stigma, and drive meaningful change for the millions affected by this disease,” the Global Alliance of Sickle Cell Disease Organizations (GASCDO) states on its website.

“Being a caregiver is not easy when the caregiver is a parent. They lose time and often wages from their job; they lose time spent with other family members; time is lost from family functions, and just as important, they lose time for themselves. Many caregivers suffer burnout and keep going, only because they know they have to,” Donna Pennington Monroe, executive director at the Sickle Cell Association of Delaware, told Sickle Cell Disease News in an email. “June 19 is World Sickle Cell Awareness Day as proclaimed by the United Nations General Assembly in 2008 to increase knowledge and understanding of sickle cell disease and the challenges faced by the patients, their families and caregivers.”

GASCDO is encouraging affiliated groups to work with it to advocate for SCD families by writing local governments about community issues, sharing community members’ stories, or conducting an awareness campaign.

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Shining a light on World Sickle Cell Day

SiNERGe, the Sickle Cell Improvement in the Northeast Region through education project, is reprising its “Shine the Light on Sickle Cell” campaign wherein supporters host local gatherings to illuminate community issues and celebrate patients. Now in its sixth year, #ShineTheLightOnSickleCell is organized by 46 community-based organizations and medical providers with support from the federal Health Resources and Services Administration, as part of the Sickle Cell Disease Treatment Demonstration Program.

“By illuminating our communities in red, we are symbolizing the urgency and passion needed to address the challenges of Sickle Cell Disease,” said Zemoria Brandon, chair of the campaign’s Steering Committee and administrator/social worker at the Philadelphia/Delaware Valley Chapter of the SCDAA.

Resources are available in Spanish, French, and English, along with a logo and flyer. A gallery also shows how the initiative has been observed throughout the nation. Supporters can follow the event on Facebook.

“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 event webpage states. “Together, we must and will find a universal cure for sickle cell disease.”

The Sickle Cell Disease Association of America will again present its SickleTini Summer Soiree virtual happy hour from 5:30-7 p.m. EST. Registration is available and more details are forthcoming for the event, which seeks to spread awareness, celebrate resilience, and foster community spirit. Organizers hope to raise $20,000.

“We’ll be shaking things up during this evening filled with tantalizing flavors, vibrant music and delightful company, all while learning about sickle cell disease and strengthening our community,” a webpage states. “Whether you’re a mixologist extraordinaire or simply enjoy sipping on something special, this event is for you.”

The association is also calling attention to a number of other awareness day events in June, including:

“No matter where you are in the world, your support and participation are crucial. Let’s unite, speak with one voice, and make this World Sickle Cell Awareness Day a powerful catalyst for change,” GASCDO states.

“This disease highlights how important it is to care for the whole person — where someone lives, works, goes to school, how they access food and recreational activities all influence their overall health,” said Stephanie H. Guarino, MD, medical director at ChristianaCare’s Comprehensive Sickle Cell Program and Center for Special Health Care Needs. “SCD also underscores the need to address bias and discrimination as contributors to a person’s physical and mental well-being. Caring for those with sickle cell disease is a team effort and requires everyone to get involved.”