About the Event
Cayenne Wellness Center, in partnership with the Global Alliance of Sickle Cell Disease Organizations, invites the global sickle cell community to join the 24-Hour World Sickle Cell Day Marathon. This virtual awareness and action event brings together individuals living with sickle cell disease, caregivers, advocates, healthcare professionals, researchers, and community leaders from around the world.
This year’s theme, Closing the Survival Gap: Equity in Sickle Cell Care, calls us to examine the barriers that still prevent people from receiving timely, compassionate, and effective care. Through global conversations, storytelling, education, advocacy, and community engagement, we will amplify voices and move closer to equity in action.
Event Highlights
Global Conversations
Hear from speakers and organizations representing communities across the United States, Canada, Africa, Europe, India, the Caribbean, and beyond.
Lived Experience
Warriors, caregivers, siblings, advocates, and families will share real stories about access, advocacy, resilience, and equity.
Action & Awareness
Sessions will explore healthcare equity, mental health, data collection, blood and stem cell registries, policy advocacy, and community support.
Who Should Attend?
This event is open to individuals living with sickle cell disease, caregivers, families, healthcare providers, researchers, nonprofit leaders, policymakers, advocates, students, educators, and allies who want to better understand sickle cell disease and support meaningful change.
Agenda At-a-Glance
| Time EST / PST | Session | Presenter(s) |
|---|---|---|
| 12:00 AM / 9:00 PM | Welcome | Dr. Carolyn Rowley, Biba Tinga |
| 12:15 AM / 9:15 PM | Spilled Milk Film + Open Discussion | CWC + GASCDO |
| 12:45 AM / 10:00 PM | Discussion About Sickle Cell in the Media | Gabriel, Special, Emmanuel |
| 2:00 AM / 11:00 PM | Sickle Cell and G6PD Deficiency | Dr. Salam Salim Al Kindi |
| 2:45 AM / 11:45 PM | East Africa / Kenya | Eunice Owino |
| 3:30 AM / 12:30 AM | Video Reels | International Participants |
| 4:00 AM / 1:00 AM | Addressing the Burden of SCD in Nigeria | M. Abdulqadir Gambo Musa |
| 4:45 AM / 1:45 AM | Use of Hydroxyurea Globally | Dr. Thomas Lewis |
| 5:30 AM / 2:30 AM | Community Engagement: Kahoot + Giveaway | Event Team |
| 6:00 AM / 3:00 AM | Men/Women Support Group #1 | Breakout Room Facilitators |
| 7:30 AM / 4:30 AM | Group Summary | Ade Sawyerr |
| 8:00 AM / 5:00 AM | SCD Care in Germany | Elvie Ingoli |
| 8:45 AM / 5:45 AM | An Update on Closing the Survival Gap in India | Dr. Ruchita Patel |
| 9:15 AM / 6:15 AM | The Role of a Caregiver and the Fight Against SCD | Carley Cole-Cavins, Maite Rodriguez, Cynthia Moorer |
| 10:00 AM / 7:00 AM | Warrior Speaks | Alvin Merchant, Karen Eddy, AJ Phommalee |
| 10:30 AM / 7:30 AM | What is World Sickle Cell Day? | McKenzie Franklin |
| 11:00 AM / 8:00 AM | World Health Organization: Closing the SCD Survival Gap in Africa | Kofi Mensah Nyarko |
| 12:00 PM / 9:00 AM | Sponsor Topic | Agios |
| 12:30 PM / 9:30 AM | Sickle Cell 360 Campaign | Mario Ottiglio |
| 1:00 PM / 10:00 AM | Sickle Cell Disease Association of America | Regina Hartfield |
| 1:15 PM / 10:15 AM | Closing the Survival Gap: Equity in Sickle Cell Care | Sharl S. Azar, MD |
| 2:00 PM / 11:00 AM | Community Engagement: Bingo | Event Team |
| 2:15 PM / 11:15 AM | SCD Shaping Siblings Panel | Stephen Ngao, Grusha Amunga, Heather Avant, Lamar Davis, Casey Gibson |
| 3:00 PM / 12:00 PM | Mental Health and SCD | Dr. Jude Mary Cénat |
| 4:00 PM / 1:00 PM | Legislative Advocacy and Letter Campaign | Melissa Akinlawon |
| 4:45 PM / 1:45 PM | The Importance of Data Collection | Dr. Dzifa Dordunoo |
| 5:30 PM / 2:30 PM | Community Engagement: Scattergories | Event Team |
| 5:45 PM / 2:45 PM | Reels Videos | Domestic Participants |
| 6:00 PM / 3:00 PM | Sickle Cell Coalition / ASH | Ivy Welch, MPA |
| 6:30 PM / 3:30 PM | Stem Cell Registry and the Need for Blood | Jacob Marfo, Biba Tinga, Rachel Miller |
| 8:00 PM / 5:00 PM | Community Engagement: Trivia | Event Team |
| 8:30 PM / 5:30 PM | Men/Women/Non-Specified Support Group #2 | Support Group Facilitators |
| 9:45 PM / 6:45 PM | How SCD Organizations Can Collaborate to Close the Survival Gap | Mary Bentley LaMar |
| 10:30 PM / 7:30 PM | Author’s Corner | Juliet Romeo, Tashamia La’Shea Barrow, Elle Cole, Adejoke Ejiofor |
| 11:30 PM / 8:30 PM | Wrap Up | Dr. Carolyn Rowley, Issa Ali |
| 12:00 AM / 9:00 PM | Sign Off |
Please note: Agenda times and speakers are subject to change.
Why This Theme Matters
Closing the survival gap means making sure people living with sickle cell disease can access the care, education, treatment options, mental health support, advocacy, and community resources they need to survive and thrive. Equity in sickle cell care is not only about medicine. It is about dignity, listening, timely care, and systems that respond with compassion.
Join the Global Movement
Whether you attend one session or stay with us throughout the day, your presence matters. Together, we can raise awareness, strengthen advocacy, and help close the survival gap in sickle cell care.

