Jun. 18, 2019

SHINE THE LIGHT ON SICKLE CELL .

“Shine the Light on Sickle Cell” Campaign Celebrates the
10th Anniversary of World Sickle Cell Awareness Day
Sickle Cell Community Launches 24-hour Awareness Campaign Across the Country
(DATE – CITY) SiNERGe and Sickle Cell Disease Association of America, Inc. (SCDAA) are
collaborating with sickle cell advocacy groups, community-based organizations, hospitals, governments
and other key stakeholders in the sickle cell community on Shine the Light on Sickle Cell, a 24-hour
awareness campaign to celebrate the 10th anniversary of World Sickle Cell Awareness Day on June 19,
2019.
June 19th was officially designated by the United Nations as World Sickle Cell Awareness Day. The
international awareness day is observed annually with the goal to increase public knowledge and an
understanding of sickle cell disease (SCD) and sickle cell trait (SCT), and the challenges experienced by
patients and their families and caregivers. On June 19th and within the month of June, individuals and
organizations are hosting a number of activities across the country.
QUOTE FROM YOUR ORGANIZATION’S REPRESENTATIVE
"June 19 is a day of unity and purpose for the sickle cell community," says Dr. Sophie Lanzkron,
associate professor of medicine at the Johns Hopkins University School of Medicine and co-director of
the SiNERGe collaborative. "We’re proud to work with the SCDAA to highlight the need for increased
awareness about sickle cell disease and its impact on individuals and their families here in the U.S. and
abroad."
SCD is a global health problem affecting millions of people around the world. It is estimated that
approximately 100,000 Americans have the disease, and more than 1,000,000 worldwide have sickle cell
trait. Each year, approximately 1,000 babies in the United States are born with SCD, and there is no
universal cure for this life-threatening disease.
“SCDAA is proud to collaborate with SiNERGe on this important national awareness campaign that has
brought together the diverse stakeholders within the sickle cell community to create events, activities and
opportunities to bring attention to sickle cell disease and to encourage individuals to get involved in our
efforts to advocate on behalf of the those affected by this disease,” said SCDAA President and CEO
Beverley Francis-Gibson.
Visit the Shine the Light on Sickle Cell Campaign Facebook page at
www.facebook/com/pg/ShineTheLightOnSickleCell/events to learn about the events happening
across the country on June 19 and in the month of June. Here’s a few to mark on your calendar:
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Page 2/Shine the Light on Sickle Cell Day & World Sickle Cell Awareness Day
June 19, 2019 – Australia Sickle Cell Advocacy Launch in Australia, 7:30am-9:30am
June 19, 2019 - Five Philadelphia Landmarks Go Red in Philadelphia, PA, 6pm-6am
June 19, 2019 - Philadelphia Boathouse Row Lighting in Philadelphia, PA, 6-8pm
June 19, 2019 – NY Shine the Light on SCD in Jamaica, NY, 11am-8pm
June 19, 2019 – Strike Out Sickle Cell in Highpoint, NC, 10:30am-12:30pm
June 19, 2019 – Jam for Sickle Cell in Columbia, SC, 6pm-7:30pm
June 19, 2019 – Virginia World Sickle cell Day Observation in Norfolk, VA, 4pm-8pm
June 19, 2019 – New Jersey World Sickle cell Day Celebration in Newark, NJ, 7pm-9pm
June 19, 2019 – 6
th Annual World Sickle Cell Day Symposium in Washington, DC, 1pm
June 21, 2019 – Citizens for Quality Sickle Cell Care Night at Dunkin Donuts Park in New Britain, CT, 7-
10pm
June 22, 2019 - SCDAA – 6
th Annual Walk with the Stars & Move-a-thon in Baltimore, MD, 9-12pm
June 22, 2019 – Shine the Light on SCD in Puerto Rico in Puerto Rico, 4-8pm
About Your Organization
Insert information about your organization
About SiNERGe
Sickle cell Improvement across the NorthEast ReGion through Education (SiNERGe) is a multi-state
collaborative that includes sickle cell providers and community-based organizations dedicated to
improving care for individuals with sickle cell disease throughout the Northeastern United States, Puerto
Rico, and the U.S. Virgin Islands. The collaborative is led by Johns Hopkins Medicine and is funded by
the Health Resources and Services Administration through the Sickle Cell Disease Treatment
Demonstration Program. Together SiNERGe members are working to improve access to high quality
care for individuals living with sickle cell disease and increase number of providers who possess the
knowledge, skills and attitudes to deliver high quality care. SiNERGe’s community-based organization
(CBO) initiative is led by the William E. Proudford Sickle Cell Fund, Inc.
About SCDAA
SCDAA’s mission is: To advocate for people affected by sickle cell conditions and empower communitybased organizations to maximize quality of life and raise public consciousness while advancing the
search for a universal cure. Visit www.sicklecelldisease.org.
About SCD
SCD, an inherited blood disease, causes red blood cells to have a sickle shape. Because of their
stiffness and unusual form, blood flow is blocked to different tissues, ultimately damaging them. These
sickle-shaped red blood cells contain an abnormal type of hemoglobin, hemoglobin S; normal red blood
cells have hemoglobin A. Hemoglobin is important because it helps carry oxygen throughout the body.
There is currently no universal cure for SCD.
Read more at https://www.sicklecelldisease.org/get-involved/events/awareness-month-and-world-sickle-day/