June 2022 • Volume 4 | Support our mission - Donate to SCDAA

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Thank you to everyone who came together to Shine the Light on Sickle Cell last Sunday! Buildings across the country were lit in red to raise sickle cell awareness. Check out some of the other events, activities and more that our community held in honor of World Sickle Cell Day.

Pictured (l.-r.): Shanda Ward, President of Sickle Cell Association of Harford/Cecil County and the Eastern Shore, Jennifer Hartfield, Ahydia Ward, Regina Hartfield, Sokyra Ward and Ricky Ward.

Our President and CEO Regina Hartfield joined SCDAA member organization Sickle Cell Association of Harford/Cecil County and the Eastern Shore at the Juneteenth Festival in Salisbury, Maryland. Many member organizations held events to recognize Juneteenth and World Sickle Cell Day. Thank you for raising awareness and taking action for sickle cell warriors!

Ahead of World Sickle Cell Day, U.S. Senators Chris Van Hollen (D-Md.) and Cory Booker (D-N.J.) introduced the Sickle Cell Care Expansion Act to improve access to medical treatment and quality of life for people suffering from sickle cell disease SCD. 

SCDAA President and CEO Regina Hartfield commented on this legislation, noting that “A major barrier to receiving high-quality care for sickle cell warriors is the lack of access to medical professionals, such as hematologists, who are trained to treat sickle cell disease. Many of our warriors are routinely forced to choose between commuting for hours to see a specialist and receiving inadequate care. Nobody should need to travel out of state or great distances within the state during a crisis to be seen by a hematologist who understands their condition. The Sickle Cell Disease Association of America believes that the Sickle Cell Care Expansion Act will significantly increase the number of qualified physicians who specialize in sickle cell disease." Read more.

It's Time to Move for Sickle Cell!

Stand up for sickle cell disease by participating in SCDAA’s 9^th Annual Walk with the Stars. Join a team, create a team or participate on your own. Donors may give any amount or pledge a set amount of money based on how much you move. You can pledge to yourself and compete with others to see who can move and fundraise the most. Every dollar you raise goes toward sickle cell disease awareness, education, advocacy and research.

Livestream Memorial Service for Dr. Kwaku Ohene-Frempong

June 25 | 10 a.m. – 1 p.m. EST

Join SCDAA in celebrating the life of Dr. Kwaku Ohene-Frempong, a visionary sickle cell doctor and advocate, who passed away on May 7 at age 76. Learn more about Dr. Ohene-Frempong and his impact within the sickle cell community here. A memorial service to honor his life will take place on Saturday, June 25, in Accra, Ghana. It will be livestreamed for the hundreds of community members who will be unable to attend in person. Please register in advance here. 

Following the Playbook for SCD with Dr. Lewis Hsu

SCDAA’s Chief Medical Officer Dr. Lewis Hsu recently sat down with the sickle cell podcast Cheat Codes to share best practices on how to care for sickle cell warriors and how to convey medical news and research to patients and their caregivers. Listen to the full podcast.

This week at oneSCDvoice.com

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Summer Travel Tips

Traveling can be a major issue for people suffering with chronic illness such as sickle cell disease (SCD). This is because traveling causes excessive stress on the body, physically and mentally. Watch this video for 14 travel tips to use on your summer adventures.

oneSCDvoice is Hiring

oneSCDvoice is interested in hiring someone from the SCD community to fill a part-time, remote work position as a community manager. Qualified candidates must have an established social media presence as an SCD advocate. For more information, contact Jeni Dwyer, community engagement director, at jdwyer@rarelifesolutions.com.