Supporters set to mark World Sickle Cell Day on June 19

Events aim to raise awareness of genetic blood disorder, improve care

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by Mary Chapman |

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With events ranging from a candlelight vigil to a new hospital exhibit to a 5K, supporters are poised to mark World Sickle Cell Day on June 19 to heighten awareness of the genetic blood disorder that affects millions of people internationally — and about 100,000 individuals in the U.S.

In addition to raising awareness and funds to support families and sickle cell disease (SCD) research, the day’s events aim to help public authorities, lawmakers, scientists, industry representatives, healthcare professionals, and the general public to better understand the disorder and the challenges the community faces.

The overarching goal of World Sickle Cell Day is improving disease diagnosis and care, advocated say.

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For its part, the Sickle Cell Disease Association of America (SCDAA) is offering ways to participate in awareness events, including a reprisal of a Shine the Light campaign organized by SINERGe Community-Based Organizations. The initiative calls for people globally to host or attend a local gathering to illuminate community concerns and celebrate those living with SCD.

The organization is providing a flyer and other resources in Spanish, as well as English, in addition to sharing examples of how individuals and groups are participating. Suggestions for a #ShineTheLightOnSickleCell event include wearing something red — the color that represent sickle cell — hosting an outdoor movie night, presenting a disease teach-in, organizing a blood drive, and hosting a family fun day at an area beach or park.

The association also is calling attention to a host of other awareness day events during June. Among them:

  • A Tour of Wellness health fair will be held June 17 in Fort Deposit, Alabama, hosted by the Sickle Cell Foundation of the River Region. The Sickle Cell Foundation of Greater Montgomery also will participate in the family event, which will offer wellness resources and SCD screenings, in addition to music and fun activities.
  • World Sickle Cell Day blood drives, screenings and giveaways also are set for June 17 in Tallahassee, Florida. These events, hosted by the Sickle Cell Foundation of Tallahassee, will include face painting and other family activities.
  • A Juneteenth Redteenth Freedom Day Cultural Festival in Wellington, Florida, will be hosted on June 19 by the Sickle Cell Foundation of Palm Beach County & Treasure Coast. There will be food trucks, live music, a battle of the bands, a fashion show, and more.
  • A Shine the Light Candlelight Vigil is set for June 19 in Newark, New Jersey. Participants are invited to wear red to the event, hosted by the Sickle Cell Association of New Jersey, and “Shine the Light on Sickle Cell Disease.”
  • A Bowling FUNdraiser, billed as an event for the entire family, will be held June 24 in Tinley Park, Illinois. Hosted by the Sickle Cell Disease Association of Illinois, the fundraiser’s proceeds will be use to provide services to SCD patients.
  • A Sickle Cell 5K Walk/Run fundraiser — held for the 27th year — is set for June 24 in Indianapolis, Indiana. The Martin Center Sickle Cell Initiative is hosting the annual fundraiser to benefit its programs, including a food pantry, monthly support groups, and family support.

“June 19th was officially designated as World Sickle Cell Awareness Day,” the organization states on an event webpage, noting, “The international awareness day is observed annually with the goal to increase public knowledge and an understanding of sickle cell disease, and the challenges experienced by patients and their families and caregivers.”

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Other events being celebrated worldwide

Elsewhere, Pace Hospitals in South India is observing awareness month by citing the need for such an event, underscoring the event’s history, and offering information about the sickle cell trait. These efforts highlight this year’s global theme: “Building and Strengthening Global Sickle Cell Communities, Formalizing Newborn Screening and Knowing Your Sickle Cell Disease Status.”

“India has the world’s second-greatest sickle cell disease burden,” the organization notes on its website.

Meanwhile, Memphis, Tennessee-based St. Jude Children’s Research Hospital is recognizing World Sickle Cell Day by presenting facts about the inherited disease and highlighting its sickle cell program, one of the nation’s largest.

The hospital also is commemorating the day with a new award and campus exhibit. The American Lebanese Syrian Associated Charities (ALSAC), which is the hospital’s fundraising and awareness organization, recently presented the St. Jude Pioneer Award to William Terrell, MD, for his work in launching a major effort to understand SCD progression. Also, a new exhibit will be displayed at the Danny Thomas/ALSAC Pavilion that will showcase the trailblazing work of the late Rudolph Jackson, MD, one of St. Jude’s first African American physicians.

The international awareness day is observed annually with the goal to increase public knowledge and an understanding of sickle cell disease, and the challenges experienced by patients and their families and caregivers.

The Sickle Cell Foundation of Minnesota is calling attention to global awareness day by encouraging supporters to join the Shine the Light initiative and to be on the lookout for landmarks and other structures that are lit in red to mark the annual event.

In the U.K., the Sickle Cell Society is marking the day by celebrating the medical advances in SCD in recent years and by encouraging supporters to host a fundraising or awareness event, which could include a quiz night, car wash fundraiser, or a sponsored run, walk, or bike.

“We would love for you to join us and help raise awareness amongst your friends and families,” the organization states on an event webpage.