Did you know that the federal government is poised to make some of the biggest decisions in sickle cell history right now? Current pending legislation would direct an unprecedented amount of funds to sickle cell treatment, research and support. Our FY24 Legislative Priorities, developed in collaboration with Sick Cells, outline these exciting bills and requests. Read through the document to learn more about these initiatives and call your representatives to ask for their support!
Author Archives: Emma Day
June 19, 2023, is Officially Sickle Cell Awareness Day in Maryland!
Maryland Governor Wes Moore has signed a proclamation to make June 19, 2023, Sickle Cell Awareness Day! This recognition goes a long way in raising awareness about sickle cell disease, combating prejudices and lifting up our community. Thank you for supporting our cause and helping us to “Shine the Light on Sickle Cell Disease!”
Women’s History Month: Dr. Marilyn Hughes Gaston
This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth
Meet Dr. Marilyn Hughes Gaston, an internationally recognized leader in health care equality and sickle cell disease advocacy. Since 1976, she has dedicated her career to improving medical care for poor and minority families and has contributed to significant changes in the management of sickle cell disease. Despite facing racial and economic barriers, Dr. Gaston made history by publishing a groundbreaking study on sickle cell disease that led to a nationwide screening program for newborns. This initiative resulted in a significant reduction of morbidity and mortality in young children with the disease around the world. Let us acknowledge Dr. Gaston’s invaluable contributions to public health and unwavering commitment to bridging the gap of health disparities for all Americans.
SCDAA names new board members
The Sickle Cell Disease Association of America, a national nonprofit membership organization that advocates for people affected by sickle cell, named Melissa Creary and Monica Mitchell to the association’s board of directors and Chris Ruffin Jr. to the Corporate Advisory Council.
Melissa Creary
Monica Mitchell
Chris Ruffin Jr.
Melissa Creary is senior director for the Office of Public Health Initiatives at the American Thrombosis and Hemostasis Network and an assistant professor in the department of health management and policy at the University of Michigan’s School of Public Health. Over a nine-year career at the Centers for Disease Control and Prevention in the Division of Blood Disorders, she helped create and lead the first national program and data collection system for sickle cell disease at the agency. Creary received her doctorate in interdisciplinary studies focusing on health, history and culture, her Master of Public Health and her bachelor’s degree in biology at Emory University in Atlanta, Georgia.
Monica Mitchell is founder and president of MERAssociates, an award-winning, woman- and minority-owned education, research and evaluation consultancy based in the Washington, D.C., area. She has been the principal investigator or co-principal investigator of National Science Foundation-funded grants totaling over $2,500,000. Prior to launching MERA, Mitchell was program officer at the National Science Foundation and managed portfolios in the Division of Research on Learning in Formal and Informal Settings and the Division of Undergraduate Education. She earned her Doctor of Education and master’s degree in engineering at Columbia University and her bachelor’s degree in economics at the University of California, Los Angeles.
The Sickle Cell Disease Association of America’s Corporate Advisory Council advises the association’s board of directors with board recruitment, fundraising and general advisory information.
Chris Ruffin Jr. is a senior news producer for ABC24 TV in Memphis, Tennessee, and the author of “Succeeding with Sickle Cell.” Before moving to Memphis, he worked in TV news in Columbus, Georgia, and Winston-Salem and Charlotte, North Carolina, where he won an Emmy for Best Morning Newscast. Recently, he partnered with Aflac, Red Cross and Children’s of Alabama to spread awareness about sickle cell disease and mentor other sickle cell patients. Ruffin earned his bachelor’s degree in broadcast journalism from Stillman College in Tuscaloosa, Alabama.
Women’s History Month: Dr. Yvette Francis-McBarnette
This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth
Meet Dr. Yvette Francis-McBarnette, a Jamaican-born physician who specialized in treating children with sickle cell anemia. As one of the first Black women to graduate from the Yale School of Medicine, Dr. Francis-McBarnette was credited with successfully using antibiotics to treat children with sickle cell anemia 15 years before the effectiveness of those drugs were confirmed. Dr. Francis-McBarnette was also part of the White House advisory committee which made recommendations that led to the 1972 National Sickle Cell Anemia Control Act. Her contributions continue to inspire and impact the sickle cell community today.
Women’s History Month: Dr. Helen M. Ranney
This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth
Meet Dr. Helen M. Ranney, physician and hematologist. Born in 1920, Dr. Ranney dedicated her work to researching blood disorders. Her groundbreaking work on sickle cell anemia included the first description of abnormal blood cell structure and genetic factors, earning her the Dr. Martin Luther King Jr. Medical Achievement Award in 1972. Dr. Ranney was also the first woman president of the Association of American Physicians. Let’s take a moment to celebrate Dr. Ranney for the work she has done on behalf of the sickle cell community!
SCDAA to promote clinical trials
The Sickle Cell Disease Association of America, a national nonprofit membership organization that advocates for people affected by sickle cell, formed the Sickle Cell Disease C.A.R.E.S. Consortium, an initiative of pharmaceutical companies united to promote clinical trial participation and education.
“We have an opportunity and a responsibility to change the perception of clinical trials and increase the participation of sickle cell patients in clinical trials,” said Regina Hartfield, president and CEO of the Sickle Cell Disease Association of America. “Together, we will collectively leverage our resources to educate and encourage more trial participation while providing opportunities and therefore better options for the treatment of sickle cell disease.
C.A.R.E.S., which stands for Collaboration of Advocates for Research, Education and Science, consists of members Agios; Beam Therapeutics; Editas Medicine; Forma Therapeutics, a Novo Nordisk Company; Hemanext; Pfizer; Sanofi and Vertex Pharmaceuticals.
The Sickle Cell Disease C.A.R.E.S. Consortium will launch with an awareness campaign for the Sickle Cell Disease Association of America’s clinical trial finder. Available on the association’s website and mobile app, the trial finder is a centralized site to help people with sickle cell disease, their families and caregivers find clinical trials.
Clinical trials help pharmaceutical companies collect data about the effectiveness and safety of sickle cell disease treatments and can provide participants with new treatments before they become widely available. Participants can use the clinical trial finder to search for sickle cell disease-focused clinical trials by keyword, location, study type and phase, all listed in one place. The Sickle Cell Disease Association of America and Forma Therapeutics partnered to develop the trial finder in 2021.
The Sickle Cell Disease C.A.R.E.S. Consortium’s awareness campaign will use stories, videos, infographics, testimonials, public relations and marketing to spotlight the clinical trial finder as well as debunk myths about clinical research and spark conversations about trial participation.
Women’s History Month: Dr. Angella Dorothea Ferguson
This #WomensHistoryMonth, we are highlighting prominent women who have made lasting contributions to the SCD community. #WomenInMedicine #WomensHistoryMonth
Meet Dr. Angella Dorothea Ferguson, a pediatrician and sickle cell pioneer. Born in 1925, Dr. Ferguson dedicated her life to researching sickle cell disease, an unknown condition at the time. Her groundbreaking work led to the development of a blood test for infants, which is now the standard in most states. 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!
#BlackHistoryMonthHeroes: Carlton Haywood Jr.
SCDAA’s #BlackHistoryMonthHeroes highlights prominent Black members of our community who have made their mark on our history. Stay tuned this month to learn more about these inspiring individuals.
#BlackHistoryMonth Meet the late Carlton Haywood Jr. – a trailblazer in the field of health equity and bioethics. Born with sickle cell disease, Carlton never let his illness hold him back. He was an all-star student and held many degrees, including a Ph.D. in Bioethics and Health Policy from the John Hopkins Bloomberg School of Public Health. His research, informed by his own experiences with SCD, earned him a competitive National Institutes of Health grant and recognition as a leader in his field. Despite the challenges he faced, Carlton’s unwavering spirit and passion for health equity and bioethics inspired many. His legacy will live on as a shining example of resilience and dedication.
