Ohio Sickle Cell & Health Association

Research Study for Young Adults Living with Sickle Cell

Sickle cell warriors between 18-25 years old can earn a $35 gift card by participating in a one-time interview about preferences for communication on sexual health and substance use education in health care settings. Contact Claudine Lavarin at [email protected] to learn more.

2026 Virtual Hemoglobinopathy Counselor Training Course
April 22-23 | Virtual

This two-day course, presented by the Cincinnati Comprehensive Sickle Cell Center, aims to prepare clinicians and hemoglobinopathy counseling professionals to work effectively with patients with hemoglobinopathies by increasing their knowledge of hemoglobin disorders and variants. The deadline to register is April 8, 2026. Nursing and social work continuing education credits are available. For more information, email: [email protected].

To Register click this link> https://cchmc.cloud-cme.com/course/courseoverview?P=0&EID=58304

Virtual Sickle Cell Disease Policy Forum
March 17-18 | Virtual

Registration is now open for the 2026 Sickle Cell Disease Policy Forum! Join Sick Cells and the Sickle Cell Community Consortium for this virtual, two-day event. The forum will educate, equip and prepare advocates to engage directly with their legislators on key sickle cell disease policy priorities and recommendations.

Participants will receive policy education, strengthen their advocacy and storytelling skills and engage directly with their federal representatives during a live Virtual Hill Day session. SCD warriors, caregivers, advocates, family and friends from across the nation are invited to attend.

Learn more> https://sickcells.org/policy-forum/

Congress Passes Government Funding Bill with Big Wins for the SCD Community

Last week, the House of Representatives passed a package of bills providing funding for government programs for fiscal year (FY) 2026, which runs through September 30, 2026. The President has signed the bill into law. All three federal sickle cell disease programs were maintained with the same funding levels as years prior, and the package includes other SCDAA priorities.

To Learn more click on this link> https://sicklecelldisease.org/wp-content/uploads/2025/12/H-6415-Medicaid-Guidance-Infographic-Flier.pdf

Black History Month: Dr. Roland B. Scott

Our next shines a light on the life and legacy of the "father of sickle cell disease" - Dr. Roland B. Scott. Dr. Scott's groundbreaking research and dedication to patients during a time of intense discrimination paved the way for progress in SCD treatment.

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 established 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 SCD research and treatment.

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. He passed away in 2002. 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.

𝗧𝗵𝗲 𝗥𝗲𝗱 𝗖𝗿𝗼𝘀𝘀 𝗖𝗲𝗹𝗲𝗯𝗿𝗮𝘁𝗲𝘀 𝟭𝟬𝟬 𝗬𝗲𝗮𝗿𝘀 𝗢𝗳 𝗕𝗹𝗮𝗰𝗸 𝗛𝗶𝘀𝘁𝗼𝗿𝘆 𝗠𝗼𝗻𝘁𝗵 𝗔𝗻𝗱 𝗧𝗵𝗲 𝗣𝗼𝘄𝗲𝗿 𝗢𝗳 𝗚𝗶𝘃𝗶𝗻𝗴
February is Black History Month, and the American Red Cross invites you to join us in observing A Century of Black History Commemorations. This milestone reflects more than history — it is a call to action. We encourage you to reflect on the profound contributions of Black Americans and partner with us in making a lasting impact.

This month, we honor pioneers like Dr. Charles Drew, who revolutionized blood banking, and leaders who helped reshape modern medicine. Their legacy lives on in every life saved through donation.

Since 2021, 139,000+ African Americans gave their first blood donation with the Red Cross

Through our Sickle Cell Initiative, we remain committed to closing health gaps and ensuring equitable care. Together, we have provided more than 224,000 sickle cell trait screenings, empowering donors with vital health insights and supporting better treatment outcomes. This progress reflects the enduring spirit of Black excellence in science, medicine, and community care.

Donating blood is a powerful expression of that excellence. Blood donors who identify as Black play a vital role in supporting the more than 100,000 people in the United States living with sickle cell disease, offering blood donations that are often the closest match for patients who rely on regular transfusions to survive.

Thank you for hosting a blood drive. Your support helps ensure that all individuals receive the vital medical care they need.

Mark your calendars! The official save the date for the Faith Thomas Foundation’s two most anticipated events is here! See the flyer below for more information about our Bowling Fundraiser (new date) and our annual Red Diamond Gala (new location). Registration dates and times TBD.

SCDAA Community Health Worker Training Is Back!

Join us for our very first Community Health Worker (CHW) Training of 2026! This training has a unique focus on caring for individuals with sickle cell disease. It is designed to teach you everything you need to know to begin your career as a CHW.

Learn more & apply: https://chwtraining.sicklecelldisease.org/

Now Enrolling! Journey Beyond Treatment: Uncovering the Unmet Needs of Sickle Cell Disease (SCD) Warriors After Transformative Therapies

If you’re a US-based family impacted by SCD, you can take part in an IRB-approved research study to better understand the overall experiences of patients and families who have undergone gene therapy or HSCT. If you complete the approximate 30-minute survey and a 60-minute follow-up interview, you’ll receive $200.

The findings will help:
Understand the physical, social, emotional, and other unmet needs after receiving gene therapy or HSCT
Identify the types of support, resources, and education the SCD community needs
Provide insights for SCD stakeholders through publication of study results

The study is being sponsored and led by Beam Therapeutics, with support from community partners and Engage Health (a health research firm). Note: SCD Warriors who have received gene therapy through the Beam Therapeutics' trial Beam-101 are not eligible for this study.

Click this link for the Survey: https://www.engagehealth.com/survey/LoginCode.aspx?SurveyID=q7KK49m1

SCDAA’s MARAC Encourages Individuals with Sickle Cell Disease to Speak with Their Health Care Providers About Vaccinations

Jan. 16, 2026 - Recent news and discussion about vaccinations can be confusing to the sickle cell community. SCDAA’s Medical and Research Advisory Committee (MARAC) strongly encourages those living with sickle cell disease to discuss vaccinations with their providers and to keep their vaccinations updated.

Individuals with sickle cell disease (SCD) are at an increased risk of severe infections due to decreased function of the spleen. Functional asplenia, the absence of splenic function without having the spleen removed by surgery, happens in people with sickle cell disease and can make sickle cell warriors much more vulnerable to infection than the general population. Without preventive care, including vaccination and penicillin prophylaxis, many children with sickle cell disease could experience severe infections.

Although treatments for sickle cell disease have improved significantly since the 1990s, individuals with SCD can still be impacted by infections. Studies show that vaccines are powerful shields against serious bacterial and viral infections in sickle cell warriors. Even more than the general public, it is important that individuals with sickle cell disease protect themselves from infections through maintaining vaccinations.

The American Academy of Pediatrics (AAP) has provided guidance on the administration of vaccines for the general public, and MARAC endorses these tools in helping communities understand and stay informed about the importance of vaccinations:

AAP’s newly updated vaccine confidence toolkit: https://www.aap.org/en/news-room/campaigns-and-toolkits/immunizations/dd
AAP’s messaging tools (collaboration with the FrameWorks Institute) https://www.frameworksinstitute.org/resources/boosting-public-discourse-reframing-childhood-immunization/
AAP’s fact-checked series: https://www.aap.org/en/news-room/fact-checked/

We encourage all patients/caregivers to discuss vaccinations with their physician.

Fact Checked Pediatricians weigh in to address the latest misinformation by providing clear, science-backed messaging to support children and families.

Warm Holiday Wishes from the Ohio Sickle Cell and Health Association to our Patients, Families, and Community Members,

As we approach the holiday season and the close of another year, I want to extend my heartfelt wishes to each of you. This time of year offers an opportunity to reflect, rest, and reconnect with the people and moments that matter most.

On behalf of the Ohio Sickle Cell and Health Association, I wish you and your loved ones a safe, peaceful, and blessed holiday season. We recognize the strength, resilience, and courage that individuals and families affected by sickle cell disease demonstrate every day, and we remain honored to walk alongside you on this journey.

As we look ahead to the New Year, may it bring renewed hope, good health, and continued progress. We are committed to supporting you, advocating for quality care, and strengthening our community in the year to come.

Thank you for your trust, partnership, and perseverance. Please take care of yourselves and one another, and know that you are always part of the OSCHA family.

Wishing you joy this holiday season and a happy, healthy New Year.

With warm regards,
Annie J. Ross-Womack
Executive Director
Ohio Sickle Cell and Health Association

This Giving Tuesday the Ohio Sickle Cell and Health Association ask that "YOU" give the Gift of Life "DONATE BLOOD"! For more information on Sickle Cell and how you can help visit https://ohiosicklecell.org/new/about-us/