Our Advocacy Portfolio
Over the last 5 years, our collaborations have brought together patients, researchers, care partners, advocates, and industry experts to reshape how the global sickle cell community sees — and supports — recipients of cell and gene-based therapies for sickle cell disease.
In 2022, the project created patient-focused education materials for the sickle cell community with the help of more than 50 scientists, physicians, patients and other experts led by the National Human Genome Research Institute and the Bonham Lab. Patients and families who are considering gene therapy need to understand the benefits and limitations of treatments so that they can make an informed decisions. This collaboration offered accessible, understandable, and actionable educational materials.
From 2022 to 2024, Co-founder, Wunmi Bakare, partnered with Vanderbilt University’s Cooperative Assessment of Late Effects for SCD Curative Therapies (COALESCE) study supporting a unique blend of community-centered dialogue and research-driven education on curative therapies.This collaborative effort was based at the Vanderbilt Center for Excellence in Sickle Cell Disease with partners at Children's National Hospital, Johns Hopkins University, and the National Institutes of Health.
Serving as a featured panelist at the WCG Avoca Quality Consortium Summit, Co-founder Wunmi Bakare contributed to the session “Challenges and Solutions for Advancing Diversity, Equity, and Inclusion in Clinical Trials.” The summit explored how the research industry is transforming amid increasing complexity, compressed timelines, and the urgent need to modernize traditional clinical trial approaches. Joining leaders from Gilead, Moderna, and Roswell Park, the presentation examined the real-world barriers that prevent diverse participation in clinical research—and the systemic changes required to overcome them.
NW Rare Disease Coalition - Payer Forum
In 2024, our Co-founder, Wunmi Bakare was a featured speaker in the Cell and Gene Therapy session of the NW Rare Disease Coalition’s Payer Forum, an annual gathering designed to bridge dialogue between patients, payers, policymakers, researchers, and industry leaders. The Forum plays a critical role in accelerating innovation and improving access across the rare disease ecosystem. The Forum focused on strengthening collaboration with insurance companies—highlighting the essential role payers play in ensuring patients can access timely diagnostics, genetic testing, and emerging cell and gene therapies.
From 2024 to 2025, #ThroughTheGenes amplified the voices of sickle cell warriors, researchers, and advocates navigating the evolving world of cell and gene therapy. From lab breakthroughs to lived experiences, every episode bridges science and humanity — helping patients, providers, and policymakers better understand the people behind the progress.
A paid collaboration with the American Red Cross on a national campaign to raise awareness about the critical need for blood donations—especially for individuals living with sickle cell disease, cancer, and other serious health conditions that require regular transfusions to maintain their health and quality of life. Through this partnership, our aim was to educate, inspire, and mobilize our community to donate blood during a time when our national supply is dangerously low.
A research-driven, community-informed initiative designed in 2025 to expand access to accurate, ethical, and culturally responsive education around emerging therapies.Through partnerships with academic institutions, advocacy groups, and industry stakeholders, this project ensures that both patients and providers have the tools and language needed to navigate gene therapy with confidence and clarity.
Post-Transformative Therapy Track - SC3 Warrior Convention 2025
Co-led by transplant survivors Wunmi Bakare and Christelle Salomon, this patient-led, multi-day program reimagined what survivorship can look like after stem cell or gene therapy. Through healing circles, mental health workshops, and shared storytelling, the track helped participants rebuild confidence, community, and identity in a brave, inclusive space.
A 2025 collaborative storytelling campaign focused on highlighting 6–8 powerful, identity-driven stories from warriors in California living with SCD. The goal was to amplify lived experiences and illustrate how identity — including race, gender, sexuality, socioeconomic background, and more — intersects with the day-to-day reality of this condition.
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