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NFL players spotlight Sickle Cell Disease Association of America

The NFL’s My Cause My Cleats campaign features players showcasing important causes on their cleats each year during Week 13 games in early December.

Tevin Coleman’s Cleats

San Francisco 49ers running back Tevin Coleman and Arizona Cardinals linebacker Markus Golden will support the Sickle Cell Disease Association of America through the NFL’s My Cause My Cleats program by wearing custom-designed cleats with inspirational artwork and messages to raise awareness and engagement around sickle cell disease.

“We’re thrilled and grateful to Tevin and Markus for recognizing the Sickle Cell Disease Association of America on their cleats this year,” said Regina Hartfield, president and CEO of the Sickle Cell Disease Association of America. “The visibility and support mean so much to us and the thousands of families living with sickle cell disease across the country.”

Coleman is an eight-year veteran running back in the NFL. For him, supporting the Sickle Cell Disease Association of America means supporting his daughter.

“As the father of a child who lives with sickle cell disease, I know how important it is for people affected by sickle cell to receive the high-quality health care and support they need and deserve. I’m proud that my cleats this year will help support the Sickle Cell Disease Association of America and also recognize the strength of my daughter, Nazaneen, who inspires me every day,” Coleman said. “Together with my wife, Akilah, our hope is that by raising awareness and connecting people to this amazing organization, we will help more individuals and families battling this condition to live well and thrive.”

Off the field, Tevin and Akilah Coleman partner with Pfizer to advocate for sickle cell disease and share their family’s story at SickleCellSpeaks.com. Pfizer partners with the Sickle Cell Disease Association of America to advance education and awareness of sickle cell disease.

Coleman worked with footwear artist and designer Dan Gamache, known as “Mache,” to create cleats honoring those who inspire his commitment to help improve the lives of people with sickle cell. The cleats include the name of Coleman’s 5-year-old daughter, Nazaneen, and her favorite animal, a purple butterfly, alongside sickle cell imagery in the style of Hertz Nazaire, a renowned artist and sickle cell warrior. The cleats will also feature the Sickle Cell Disease Association of America’s logo and a unifying hashtag, #SickleCellMatters.

A Sickle Cell Disease Association of America celebrity ambassador, Golden grew up in St. Louis, graduated from the University of Missouri and was selected by the Arizona Cardinals in the 2015 NFL draft. He has featured the Sickle Cell Disease Association of America and sickle cell causes on his cleats in past years.

“Sickle cell disease is a condition that’s often forgotten, but it profoundly affects so many families across the country,” Golden said. “I lost my cousin Jonah at only 10 years old to the disease, and that’s why I’m so driven to bring attention to sickle cell and the Sickle Cell Disease Association of America on my cleats this year. I’m proud to once again partner with such an important organization to support people with sickle cell. I hope every step I take on the field is a step toward finding a cure for sickle cell.”

The NFL will auction Golden’s and Coleman’s cleats on the league’s website after the Week 13 games. Auction proceeds will support the Sickle Cell Disease Association of America.  

Frequently Asked Questions about SCT in Newborn Screening

Many people have questions about sickle cell trait after newborn screening. Dr. Lewis Hsu, SCDAA chief medical officer, answers some of the FAQs below.

Can this test be wrong?

The standard process for newborn screening is that a result showing sickle cell trait will be followed up with another blood test – so two tests will be done. A newborn screening result without any trait will not get a follow up blood test. The newborn screening result is usually correct, and the state labs have quality controls built in. However, issues outside of the lab can make the newborn screening process miss sickle cell trait, for example, if the baby was prematurely born, if the baby got a blood transfusion before the test, if there were problems handling the sample, or if there were errors in entering follow-up contact information.

How do I ask for a confirmation test?

If you would like to be certain about whether your older children have sickle cell trait or not, ask their doctor to order a blood test called “hemoglobin fractionation” or “hemoglobin electrophoresis.” Based on your knowledge that someone in the family has sickle cell trait, this test should be covered by your child’s medical insurance. If you run into barriers for that testing, some local sickle cell organizations (members of SCDAA) offer sickle cell testing free of charge.

Please give me quick information about sickle cell trait.

See this SCDAA brochure with the highlights of information about sickle cell trait – this is exactly what I give my patients, except that it is customized with local resource contact information. The main health concern for sickle cell trait is that the sickle gene can be passed along to the next generation.

Where can I go deeper on what sickle cell trait means for health? I want to know about everything.

The best source for more detailed and up-to-date information about sickle cell trait is this Sickle Cell Trait Toolkit. It was jointly created by the Centers for Disease Control and Prevention, the American Society of Hematology and SCDAA.  

New Publications Emphasize Inequities in Pediatric SCD Care

This week, two new publications call attention to the barriers to care children with SCD face. Prioritizing Sickle Cell Disease, an article co-authored by SCDAA Chief Medical Officer Lewis Hsu for the American Academy of Pediatrics, is a call to action within the medical community to work together to maximize available screenings and treatments. The Centers for Disease Control and Prevention’s newly released Vital Signs publication, Preventing Sickle Cell Anemia Complications in Children, reports fewer than 50% of children 2-16 years old received the recommended screening for stroke in 2019. Both publications identify racism and discrimination as barriers to quality care and potentially lifesaving preventative measures for children with SCD.

Click here to read Prioritizing Sickle Cell Disease.

Click here to read Preventing Sickle Cell Anemia Complications in Children.  

Tools for Sickle Cell Awareness Month You Don’t Want to Miss

September is Sickle Cell Awareness Month. Check out these helpful tools and learn more about how to support sickle cell warriors!

For Schools

For Employers

For Emergency Medicine

For Hospitalists

For Blood Transfusion

About Sickle Cell Trait

For Advocacy

Looking for more? Visit oneSCDvoice’s Sickle Cell Awareness Month resources for even more links and tools!  

Member Organization Sickle Cell Awareness Month Events 2022

Join an SCDAA member organization at one of these great events this September!

 

Memorial Service for Dr. Kwaku Ohene-Frempong

Dr. Kwaku Ohene-Frempong, a visionary sickle cell doctor and advocate, passed away on May 7, 2022, at 76. A memorial service to honor his life has been planned for Saturday, June 25, in Accra, Ghana. The memorial will be livestreamed for the hundreds of community members who will be unable to attend the live event in Accra. Please click here to register.

A website has also been created to commemorate Dr. Ohene-Frempong’s memory. Click here to visit the site and learn more about the outstanding impact he had on so many lives.  

SCDAA names chief financial officer

The Sickle Cell Disease Association of America named Reginald Hart Jr. as chief financial officer. Hart brings more than 20 years of experience in executive leadership, business management, strategic planning, financial operations, contracting and cost control.

Prior to joining the Sickle Cell Disease Association of America, Hart managed business finance and operations for AARP’s Legal Counsel for the Elderly, where he handled strategic and transactional financial responsibilities including the development of the annual budget, quarterly forecasts and multiyear financial plans. Hart also helped develop and implement the organization’s strategic plan.

Previously, Hart was CFO of the National Association of Housing and Redevelopment Officials. Hart oversaw all finance and accounting operations, leading a team of accounting, operations, conference planning, policy and human resources professionals. He also held the position of budget director for the association.

In addition, Hart held financial management positions with Tonya Management and Technology Consulting, including manager of contracts and finance, senior budget analyst and contract administrator. He has provided business consulting in organizational development, project management, financial systems analysis, design and implementation and contract management.

Hart belongs to the American Society of Association Executives and serves as a board member and mentor at the YMCA. He holds an MBA from the University of Maryland Global Campus and a bachelor’s degree in economics from the University of the District of Columbia.  

In Memory of Dr. Kwaku Ohene-Frempong

We are devastated to learn of the death of Dr. Kwaku Ohene-Frempong on Saturday, May 7, 2022. Dr. Ohene-Frempong was a true leader in the sickle cell community and dedicated his life and career to working with SCD. He held many roles on the Sickle Cell Disease Association of America board of directors over the years, including chief medical officer, board chair and board member emeritus. He also sat on the SCDAA Medical and Research Advisory Committee. His presence will be sorely missed in our organization and in the community at large.

Dr. Ohene-Frempong was born in Ghana, and his record of excellence as a student-athlete earned him a scholarship to Yale to study pre-med and later, a trip to the Olympics representing Ghana in track and field. He received his medical degree from the Yale School of Medicine in 1975. While finishing his degree, his son became the first baby diagnosed with sickle cell disease by Dr. Howard Pearson in the pioneering newborn screening program at Yale in 1972. His firsthand experience with sickle cell and newborn testing motivated him to dedicate his life and career to studying and advocating for sickle cell.

In the United States and all over the world, Dr. Ohene-Frempong was a leading pediatric sickle cell physician. He was director emeritus of the Comprehensive Sickle Cell Center at The Children’s Hospital of Philadelphia, emeritus professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania and president of the Sickle Cell Foundation of Ghana.

His landmark analysis of stroke in the Cooperative Study of Sickle Cell Disease showed the high rates of stroke in children from blocked blood flow and high rates of stroke in adults that were from bleeding aneurysms. He also pioneered a newborn screening and follow-up program in Kumasi, Ghana, where one in 50 babies have sickle cell disease. It has been a beacon and training center for sickle cell care and research in Africa. Dr. Ohene-Frempong founded the Sickle Cell Foundation of Ghana and was a founding member of the Global Sickle Cell Disease Network.

To learn more about Dr. Ohene-Frempong’s outstanding life, we encourage you to listen to this podcast episode about his story.

We will greatly miss Dr. Ohene-Frempong’s dedication, passion and intelligence. We will share more information about services as they are announced. Our sincerest condolences go out to his friends and family. 

SCDAA partners with Phi Beta Sigma Fraternity

The Sickle Cell Disease Association of America (SCDAA) partnered with Phi Beta Sigma Fraternity Inc. to increase awareness about sickle cell disease and raise funds to support education about the negative effects of sickle cell disease on the physical, economic and social well-being of individuals with the condition.

“SCDAA is excited to again partner with the Phi Beta Sigma Fraternity, and we are honored to have been chosen as a recipient of their donations,” said Regina Hartfield, president and CEO of SCDAA. “Phi Beta Sigma is deeply committed to serving and supporting the community, as is SCDAA. Their support will go far to benefit those living with sickle cell disease.”

The partnership will support the SCDAA and sickle cell community through raising funds, mobilizing blood and bone marrow drives and collaborating to educate the community about sickle cell disease and sickle cell trait. Phi Beta Sigma Fraternity will encourage chapters to collaborate with their local American Red Cross to host blood drives and the Be The Match Registry to host bone marrow drives. Chapters will conduct screenings to help adolescents and adults detect sickle cell and organize fundraisers for sickle cell research, education and children’s services.

“SCDAA is proud to continue its partnership with Phi Beta Sigma in raising awareness about sickle cell disease,” said Thomas L. Johnson, chair of the SCDAA board of directors. “Its dedication to the mission of SCDAA is exemplary of providing support and assistance for those in need.”

Phi Beta Sigma Fraternity was founded at Howard University in Washington, D.C., in 1914 to exemplify the ideals of brotherhood scholarship and deliver services to the general community. The fraternity’s motto is “Culture for Service and Service for Humanity.”

“This disease effects one out of every 365 Black or African-American births and one out of every 16,300 Hispanic-American births,” said Chris Rey, president of the fraternity. “Phi Beta Sigma is dedicated to doing all we can to change these grim numbers. We are excited to continue our partnership with SCDAA to continue to fight for a cure.”