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COMMUNITY CONSORTIUM
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Event Book
SUMMIT
It is with great pleasure that the Sickle Cell Community Consortium (SC3) invites you to the upcoming 8th Annual Leadership Summit & General Assembly of Sickle Cell Patients, Caregivers, & CBOs.
This annual assembly, composed of a diverse range of sickle cell stakeholders, and patterned after the United Nations, places patients and caregivers (of all ages) in top leadership positions, guiding the direction of advocacy, research, education, legislation, and policy. Following the SC3 motto “Nothing For Us, Without Us,” we are delighted to announce the 2024 theme “Lead the Way: A New Era in Sickle Cell Advocacy” and are eager to share the theme with an extended audience of both in-person and virtual attendees via Zoom Events.
Post-pandemic, the SC3 team has worked to stay ahead of the curve. Our goal has been to help prepare our Partners to thrive in this new world with its ever-changing rules. The new world isn’t coming, it is already here, and with it, advocates and CBOs must be prepared to address challenges that do not yet exist, using tools that have not yet been invented. The theme of last year’s Summit was “Expert Advocacy in the Digital World,” with topics ranging from “Cryptocurrency and the non-profit” and “Digital privacy compliance” to “Alternative funding sources” and “Digital grant reconciliation”. We learned that just as our patient communities, government agencies, and alternative funding sources are engaging and transitioning to online spaces, we, too, must learn to co-exist in the digital space.
This year, we focus on “Leading the Way” with training and workshops designed to embrace this new era in advocacy, marked by the newly approved FDA gene therapies for sickle cell, the rise of Artificial Intelligence (A.I.) technologies, and increased understanding of collective self-care and awareness of the devastating consequences of leadership burnout and compassion fatigue.
We are seeking support for this event and hope you will consider supporting us at the Platinum level or higher. Unique sponsorship packages are available, along with opportunities to tailor packages to meet individual needs. We are eager to continue this forward momentum and look forward to developing new relationships and partnerships necessary to support our collective goals.
The Summit is the primary meeting of the Sickle Cell Community Consortium. All Consortium partners travel to Atlanta Georgia to participate in the Leadership Summit and to convene the annual General Assembly of Patients, Caregivers and CBOs.
This meeting serves three purposes:
CBO Best Practices and Expert Advocacy Training
Lectures, workshops,
roundtable discussions, panels, and creative all focused on supporting the development and sustainability of strong, effective CBOs and independent patient/caregiver advocates.
Updates & Discussions
Provide updates from government, industry, academia, and community platforms & initiatives.
Convene the General Assembly of Patients, Caregivers, and CBOs
The General Assembly is the primary organ and decision-making body of the Consortium. Comprised of representatives from all partner CBOs, as well as, independent patients/ caregivers, this group identifies and prioritizes problems, needs, and gaps in the sickle cell community, and then works collectively with other partnered groups to define and execute mutually beneficial and sustainable solutions.
General Assembly II, G2
This meeting is followed in October by the General Assembly, II (The G2), where the SC3 Annual Business Meeting is conducted.
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ABOUT SC3
The Sickle Cell Community Consortium is a US-based non-profit formed in 2014 to “harness and amplify the power of the patient voice”. The Consortium is comprised of sickle cell community-based organizations (CBOs), patient and caregiver advocates, community partners and medical and research advisers. These stakeholders collectively form the General Assembly of CBOs and Advocates, the decision-making body of the Consortium. The Consortium acts as an organizing entity providing the framework for the stakeholders of the General Assembly to apply a model of Collective Impact to define problems and gaps in the sickle cell community, identify strategies to address those needs and gaps, and determine the CBO, Community, and Corporate partnerships best equipped to implement those strategies to achieve significant and sustainable change.
2016
Year Started
4
Day Event
20+
Sessions
100+
Partners
THANK YOU SPONSORS!
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Dr. Lakiea Bailey
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Dima Hendricks
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Mia Robinson
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Heather Avant
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Lorien Talmadge
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Chanell Grismore
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Sharonda Sikes
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Wunmi Bakare
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Shamonica Wiggins-Mayes
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Dr. Raymona Lawrence
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Dr. Patrice Buckner Jackson
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Shaunii Rawls
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Doris Bailey
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Sarafinah Bukirwa
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Renee Bailey
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Kristin Ivy-Davis
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Dr. Alexcius Branch
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Dr. Wanda Shurney
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Tayo Togba
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Dr. Tilicia Mayo-Gamble
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Josh Trent
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Jessica Young
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Jackie Staub
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Gernissia Cherfrere