Category Archives: Uncategorized

In Memory of Carlton Haywood, Jr., Ph.D.

We are devastated to share the news of the passing of Carlton Haywood, Jr., Ph.D., on December 31, 2021. Carlton was an accomplished academic whose research focused on bioethics and sickle cell. His experiences as a sickle cell warrior guided his work as a scholar and an advocate. As such, Carlton was a well-respected and celebrated voice in both the sickle cell and research communities.
Carlton grew up in Atlanta, Georgia, and never let sickle cell get in the way of his achievements. He received a bachelor’s and master’s degree from the University of Virginia and completed a doctorate of philosophy in health policy and bioethics in the department of health policy and management at the Johns Hopkins Bloomberg School of Public Health. After completing his studies, he became a faculty member at the Berman Institute and the department of hematology at the Johns Hopkins School of Medicine.
“Carlton had a unique perspective as both an academic professor at a prestigious institution and an individual living with sickle cell disease who could link the academic theories to ‘lived experience,'” said Lewis Hsu, M.D., chief medical officer of the Sickle Cell Disease Association of America. “He generated some of the first scholarly publications on the injustices suffered by individuals with sickle cell disease. He called attention to issues that inhibit sickle cell disease care and research and worked effectively to resolve them. His quiet determination was inspiring to me.”
He was a dedicated sickle cell advocate and spent his career studying important issues to the sickle cell community, including patient-centered care and trust in the medical industry. His research also addressed the intersections of bioethics and clinical research, and his work earned him national recognition and helped inform sickle cell policy. We invite you to read more about Carlton’s life and career in this article.
SCDAA mourns the loss of Carlton, and we send our deepest condolences to his family and friends. A memorial will be planned at a later date.

A Word From Our Sponsor: bluebird bio

Thank you to bluebird bio for their generous support of our 49th Annual National Convention!

How can you help to spark change in Sickle Cell Disease (SCD)? By staying proactive in sickle cell care and planning for the future. Be the Spark, a platform for education and information brought to you by bluebird bio, was created in collaboration with advocacy organizations to drive change in sickle cell. bluebird bio believes that achieving change in sickle cell starts with listening, making no assumptions, and amplifying the voices of people who are already working tirelessly to make a difference. bluebird bio is committed to supporting the sickle cell community and strives every day to help sickle cell gain the recognition it deserves. Visit SparkSickleCellChange.com to build on your sickle cell knowledge and learn how you can spark the conversation for change!

This information and the content on SparkSickleCellChange.com is not intended to replace discussions with your healthcare provider. Please discuss any questions with a US healthcare professional.

Learn more about bluebird bio at: www.bluebirdbio.com  

HCPLive® Announces Partnership With Sickle Cell Disease Association of America (SCDAA)

HCPLive® Announces Partnership With Sickle Cell Disease Association of America (SCDAA)
SCDAA’s mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to raise awareness and maximize patient quality of life.
(CRANBURY, N.J. – September 7, 2021) – HCPLive®, a multimedia platform dedicated to providing physicians with up-to-date specialty and disease-specific information to help them offer the best patient care, is thrilled to announce the addition of the Sickle Cell Disease Association of America (SCDAA) to its Strategic Alliance Partnership (SAP) program.
“The addition of the Sickle Cell Disease Association of America to our SAP program will allow us to further collaborate on initiatives that will positively impact the industry,” said Mike Hennessy Jr., president and CEO of MJH Life Sciences™, parent company of HCPLive®. “With a mission of advocating to raise awareness and maximize patient quality of life, SCDAA’s goals align directly with ours as a publication.”
As a leader in promoting and advancing initiatives focused on people affected by sickle cell conditions worldwide, SCDAA and its affiliate organizations pursue national health care objectives while demonstrating how community-based organizations can work. After more than 45 years, SCDAA continues to recognize how critical it is to raise awareness and gain support for both the social and public health aspects of sickle cell disease.
SCDAA’s national efforts focus on six broad areas:

  • Research
  • Public Health Education
  • Professional Health Education
  • Patient Services
  • Community Services
  • Support to Global Organizations and Practitioners

The SAP program builds a community of advocacy groups, medical associations, and medical institutions to foster collaboration and an open exchange of information among trusted peers, for the ultimate benefit of patients and their families. As part of this joint effort, HCPLive® will work with the partners to share exclusive information and improve patient outcomes. 
For the full list of HCPLive® SAP partners, click here. 
About HCPLive®  
HCPLive® is a comprehensive clinical news and information portal that provides physicians and other health care professionals with up-to-date specialty- and disease-specific resources to help them deliver better care to patients. Readers have access to breaking news, video interviews with physician experts, in-depth conference coverage, finance and practice management updates, insights and analysis from physician contributors and other resources. HCPLive® is a brand of MJH Life Sciences™, the largest privately held, independent, full-service medical media company in North America, dedicated to delivering trusted health care news across multiple channels.  
HCPLive®Media Contact  
Alyssa Scarpaci, 609-716-7777 
ascarpaci@mjhlifesciences.com   

The Hibiscus Study is Enrolling Volunteers

Study Title:
An adaptive, randomized, placebo-controlled, double-blind, multi-center study of oral FT-4202, a pyruvate kinase activator, in patients with sickle cell disease (SCD).
Study Description:
The Hibiscus Study™ is evaluating the safety and effectiveness of an investigational medication compared with placebo (inactive drug) in people 12 to 65 years of age with SCD. The study is evaluating if the investigational medication can improve anemia and reduce the number of pain crises per year.
Eligibility Criteria:
Eligible participants must:

  • Be 12 to 65 years of age
  • Have a confirmed diagnosis of SCD
  • Have had at least 2 pain episodes (vaso-occlusive crises) within the past 12 months
  • Not have had more than 10 vaso-occlusive crises within the past 12 months
  • Be willing and able to follow all study requirements and study visit schedules

There are additional eligibility requirements, which the study doctor will explain to you. To learn more about study participation, and to see if you or someone you know may qualify, visit HibiscusSC.com or call 844-608-0808 to complete the prescreening questionnaire.  

Walk with the Stars to support Sickle Cell Disease Association of America

Sickle Cell Disease Association of America will hold the eighth annual Walk with the Stars fundraiser, where participating teams and individuals can track their walk, run, dance or movement steps while raising funds to support the association in preventing the complications of sickle cell disease through awareness, education, advocacy and research.
Walk with the Stars will kick off May 22 at 10 a.m. with a Facebook Live event and culminate in a virtual Walk with the Stars celebration July 10 from 9 to 11 a.m., recognizing participants’ steps and success.
“Join family members, loved ones, friends and co-workers for Walk with the Stars to help support a universal cure for sickle cell disease,” said Beverley Francis-Gibson, president and CEO of Sickle Cell Disease Association of America. “Walking, running and moving for Walk with the Stars not only benefit participants but will change the lives of those affected by sickle cell disease. Together we can break the sickle cycle.”
Sickle Cell Disease Association of America has raised a total of over $500,000 through Walk with the Stars to support better treatments and improvements in the quality of health for individuals, families and communities affected by sickle cell disease.
To learn more and register for Walk with the Stars, visit bit.ly/SCDAAwalk2021. Sponsorships are available by emailing bfrancis-gibson@sicklecelldisease.org.  

Black History Month: Dr. Roland Scott

For our final #SCDHistoryHighlight of Black History month, we are excited to reflect on the life and work of Dr. Roland Scott. Dr. Scott has been celebrated as the “father of sickle cell disease” in the United States, and completed groundbreaking research as he advocated for his patients during a time of intense discrimination.
Dr. Scott was born in 1909 and graduated with his medical degree from Howard University in 1934. He spent the majority of his career in the pediatrics department of Howard University. During this time, he began to notice the high number of African American children in the emergency room experiencing sickle cell symptoms and complications. Dr. Scott was a trained allergist, but he switched his focus to help improve treatment for this misunderstood disease. A compassionate pediatrician, Dr. Scott held office hours in the evenings during which he would see African American children and families who were discriminated against and denied access to medical treatment.
Dr. Scott would go on to publish hundreds of articles on sickle cell disease during his time at Howard University. Although he did not specialize in hematology, in 1948 Dr. Scott published a paper on the sickling of red blood cells in newborns. This paper paved the way to a better understanding of sickle cell disease and laid the groundwork for newborn screening as we know it today.
In addition to being a dedicated researcher, Dr. Scott was a fierce advocate for sickle cell disease. His advocacy played a large role in the federal government’s passing of the Sickle Cell Anemia Control Act of 1971, which ensured nationwide funding for the research and treatment of sickle cell disease. In 1972, Dr. Scott founded the Howard University Center for Sickle Cell Disease, which continues to conduct research and provide care to sickle cell patients today. Dr. Scott’s work and advocacy changed the landscape for sickle cell disease, and we owe so much of our capability to treat and understand sickle cell to his efforts.

Black History Month 2021: Dr. Angella Dorothea Ferguson

We’re excited to continue our celebration of Black history this week by highlighting the life and work of Dr. Angella Dorothea Ferguson, a pediatrician and sickle cell pioneer. Dr. Ferguson’s research changed the landscape for sickle cell diagnosis in children and made a huge impact on how we identify and treat SCD to this day.
Dr. Ferguson was born in 1925 and received her bachelor’s and medical degrees from Howard University. After graduation, she began work as a medical researcher at Howard University’s School of Medicine, where she aimed to gather data correlating the height and weight of children with age. While completing this research, she discovered that a large number of African American children suffered from sickle cell disease, which, at the time, was a fairly unknown condition. She changed gears and committed her time to understanding how the disease presents itself in children. In doing so, she became one of the first researchers to dedicate her studies to sickle cell.
Dr. Ferguson’s research had lasting impacts on how sickle cell is diagnosed and treated. She developed a blood test to diagnose the disease in infants, and her test is the standard in most states to this day. Thanks to her research, we better understand which symptoms to look for in children and can start treating sickle cell earlier. Thanks to Dr. Ferguson for the work she has done on behalf of our community!

SCDAA Celebrates Black History Month 2021

Sickle cell disease plays an important role in black history, and vice versa. This month, we will highlight African American sickle cell pioneers to learn more about our community’s history.
Our first #SCDHistoryHighlight shines a light on the life and work of our co-founder Dr. Charles F. Whitten. Dr. Whitten was a pediatric hematologist whose dedication to supporting the health of sickle cell patients paved the way for advances in screening, education and more. His pioneering work makes him one of the most important figures in sickle cell history.
 
Dr. Whitten is widely celebrated to this day for his dedication to sickle cell screening. In 1974, he established the Sickle Cell Detection and Information Center in Detroit, Michigan. The center was the most comprehensive community program in the country at the time. During his time at the center, Dr. Whitten educated children and families about sickle cell disease and created color-coded dice to teach couples about the genetic risks of the condition.
 
Prior to founding the Sickle Cell Detection and Information Center, Dr. Whitten practiced medicine for many years as a faculty member of Wayne State University School of Medicine. Dr. Whitten was dedicated to increasing the representation of African American physicians in the medical field, and created a post-baccalaureate program that graduated almost 300 students of color by it’s 30th anniversary.
 
Dr. Whitten understood the urgency of creating a national effort to address sickle cell disease, and was crucial to founding SCDAA. He also founded the Sickle Cell Disease Association of America of Michigan, which remains one of SCDAA’s original member organizations. SCDAA thanks Dr. Whitten for all he did to advance the treatment of sickle cell disease and make medicine more equitable for providers and patients. His place in our history is well deserved.

SCDAA promotes Kevin Amado Jr.

Sickle Cell Disease Association of America promoted Kevin Amado Jr. to community impact and engagement manager. Amado joined the association last year with 16 years of experience as a health educator, case manager, community health worker and certified health insurance navigator.
As community impact and engagement manager, Amado will develop and implement community health worker training programs and identify community resources for health workers, organizations and members of the sickle cell community. In addition, he will coordinate Sickle Cell Disease Association of America programs and efforts in communities nationwide.
“I hope to share my knowledge and experience with new up-and-coming community health workers. Throughout my years of working in the community, I have learned so much, not only through hands-on experience, but from those who came before me and passed on their wisdom to me,” Amado said. “I’m an advocate for the communities I serve, believing all have the right to self-advocacy, self-determination and self-actualization.”
Prior to joining the Sickle Cell Disease Association of America, Amado served as a case manager for Health Care Access Maryland’s Certified Navigator Connector Program. He was a community health worker with Healthy Howard and a senior health education specialist with the Virginia Department of Health. He has held other social services positions in Maryland and Virginia.
Amado holds a Master of Public Administration from University of Baltimore and a Bachelor of Science in community health education from Morgan State University. He lives in Baltimore.