I had the incredible opportunity to present my first-ever abstract at SCCAPE (Sickle Cell Disease Community-Based Organization and Patient Engagement Conference). It was both a professional milestone and a deeply personal achievement—one that allowed me to share the impact of a project close to my heart: the Sickle Cell Caregiver Summit.
Why This Abstract Mattered
My abstract, “Four Years of Advocacy: Empowering Caregivers Around the Globe,” chronicled the growth and impact of the Sickle Cell Caregiver Summit, a global virtual conference created to support and uplift caregivers of those living with sickle cell disease (SCD). As a mother of a teenager living with SCD and someone who understands the unique challenges caregivers face, presenting this body of work wasn’t just about numbers and statistics—it was about visibility, validation, and hope.
Sharing the Journey
Since 2021, the Summit has welcomed over 1,500 attendees, offering education, community, and tools to help caregivers thrive. In 2024 alone, 70% of attendees downloaded our app, facilitating connections that led to over 3,900 messages exchanged and 19 peer-led meetups. These numbers aren’t just metrics—they represent real people finding support, encouragement, and connection in a space built specifically for them.
It was empowering to present this data to a room filled with researchers, clinicians, advocates, and fellow caregivers. Knowing that others saw value in our work and its measurable impact reminded me why this summit exists: to fill a gap that has too often been overlooked in the SCD space.
Highs, Lows, and Lessons Learned
One of the most rewarding moments of this experience was hearing how other organizations were inspired by our model. People approached me after the session, not only to offer congratulations but to ask how they could adopt similar strategies for caregiver engagement in their own communities.
But there were also humbling lessons. I was reminded that many caregivers in underserved regions still don’t know this summit exists. Reaching them remains a challenge—and a call to action. Presenting at SCCAPE helped me connect with potential partners who can help bridge this gap.
Why This Matters
Caregivers are often the invisible lifeline in the lives of people with sickle cell disease. They deserve resources, support, and recognition. The Sickle Cell Caregiver Summit isn’t just a conference—it’s a movement. And being able to tell that story on a national platform was both validating and energizing.
Looking Ahead
As we prepare for our fifth summit in 2025, we’re dreaming even bigger: expanding our outreach, increasing digital access, and strengthening our partnerships. This first presentation won’t be my last—it’s the beginning of a new chapter in advocacy and storytelling.
Want to Join Us?
If you’re a caregiver, advocate, or organization looking to connect, support, or get involved, visit SCDCaregivers.org. We’re building something powerful, and we’d love for you to be a part of it.
View the full Abstract Poster here.