SCKIN
About SCKIN
SCKIN
The Sickle Cell Knowledge and Information Network is a 501(c)(3) not-for-profit organization registered in the State of New York. Our EIN is 33-1763512.
Our vision
A world where no one suffers from sickle cell disease for lack of knowledge that already exists.
Our mission
We aim to improve the lives of people living with sickle cell disease by making useful and reliable information about the disease universally accessible.
Our Board
Zacharie Liman-Tinguiri
Founder
Matthew Agnello
Director of Finance
Matthew Agnello is a finance and operations leader with a background in data analytics, financial reporting, and technology-enabled transformation. He brings experience working with mission-driven and nonprofit organizations, including serving as a board fellow with the Food Bank of the Southern Tier, where he supported initiatives focused on operational effectiveness and impact. Matt is deeply passionate about social justice and equity, and about using technology to expand access to critical information for underserved and under-resourced communities. He holds an MBA from Cornell University with a focus in Sustainable Global Enterprise and completed a capstone project in partnership with a nonprofit in India aimed at creating sustainable access to sanitation while empowering women-owned ventures.
Lewis Thomas, MBBS
Director of User Experience
Dr Lewis Thomas lives with sickle cell in Manchester UK. He practiced as a medical doctor for 12 years before stepping back from his role as a General Practitioner in 2025. Since then he's become an established creator of relatable and trustworthy sickle cell education online. Drawing on his medical training and lived experience with sickle cell disease, he empowers others living with the condition to understand their bodies, advocate for themselves and stay healthy. He's also an accredited personal development coach. In December 2025 he created an online sickle cell community called The Sickleverse. This encapsulates all his patient education services and continues to address the unmet needs raised by his social media following. To complement this work he also serves on the board of the Sickle Cell Knowledge and Information Network. As Director of User Experience he ensures patients are able to engage with AI in a meaningful way to improve their health.
Wunmi Bakare
Director of Development
Wunmi Bakare is a multicultural citizen and pioneering advocate in the sickle cell and rare disease community, known for her commitment to inclusion and stigma eradication. With a fervent dedication to advancing awareness and understanding, Bakare leverages both proactive and reactive media engagement to transform perceptions of sickle cell disease. Her lived experience fuels her advocacy and informs her leadership roles on the advisory board for the National Heart, Lung, and Blood Institute, the American Board of Medical Specialties, Beam Therapeutics, Vertex Pharmaceuticals, Pfizer, Fulcrum, and Healthful Data as well as her board memberships with the Sickle Cell Knowledge & Information Network, Sickle Cell Disease Partnership, and The Gift of Adoption Fund.
Diagnosed with the severe HbSS form of sickle cell disease at just 18 months old, Bakare's grueling journey led her to participate in a groundbreaking clinical trial at the NIH, culminating in a successful allogeneic stem cell transplant in 2019. Bakare thrives as the Founder of WBPR Agency working across diverse corporate disciplines and providing strategic media counsel to top brands. In 2025, she launched #SickleCellProdigy, a patient-driven nonprofit organization dedicated to redefining survivorship for individuals living with sickle cell disease who are exploring or recovering from transformative therapies, including bone marrow transplant and gene therapy.
Kyle Emile
Director of Partnerships
Kyle Emile is a partnerships and operations leader whose career spans technology and the nonprofit sector. He serves as Chief of Staff for Global Monetization Partnerships at Meta, and previously held operations roles at Motive, Hustle, and Whirlpool Corporation. In 2012, as an undergraduate psychology student, Kyle founded Free Intelligent Conversation (FreeIC), a nonprofit that facilitates meaningful conversations between strangers in public places; he has served as its Executive Director ever since and shared its story in a TEDx talk. He is also Board Chair of BridgeUSA, an organization fostering constructive dialogue across political divides. As Director of Partnerships at SCKIN, Kyle leads partnership development and grant review.
Lewis Hsu, MD
Medical Director
Dr. Hsu is a pediatric hematologist who is dedicated to finding cures for sickle cell disease, and to improving treatment and education until cures can be found. He joined UIC as director of the Sickle Cell Center and Professor of Pediatrics in July 2011. He led large pediatric sickle cell programs at Emory University, St. Christopher's Hospital for Children, and Children's National Medical Center. His clinical and translational research experience include multicenter landmark clinical trials of sickle cell stroke prevention and bone marrow transplantation, and contributing to understanding of inflammation and nitric oxide in mouse models of sickle cell disease. He has published over fifty peer-reviewed papers, mentored numerous physicians and graduate students, and contributed to four sickle cell websites devoted to patient education. He has also co-authored a book, now in its third edition, entitled "Hope and Destiny: The Patient and Parent's Guide to Sickle Cell Disease and Sickle Cell Trait." In addition to sickle cell disease, his clinical interests include thalassemia and adolescent transition. Among his research interests are sickle cell disease, health education, bone marrow transplantation, and inflammation and vasculopathy, and health disparities. In addition to English, Dr. Hsu speaks Spanish, Chinese (Mandarin), and a little Portuguese.
Mamadou Kiari Liman-Tinguiri
Director
Ambassador Mamadou Kiari Liman-Tinguiri, PhD, is a development economist with three decades of experience spanning academia, the United Nations system, and international diplomacy. He served as the Ambassador of Niger to the United States from 2022 to 2023. Earlier in his career, he taught economics at the University of Nancy II in France and at Abdou Moumouni University in Niamey, where he chaired the Department of Economics and served as Dean of the Faculty of Economics and Law, before holding senior roles with United Nations agencies. He is the author of a dozen articles in academic journals, several book chapters, and the book "La démocratie dans les États fragiles" (L'Harmattan, 2016). He serves on SCKIN's board as a Director.
Maimouna Phelan
Director
Bill Phelan
Director
Our Founder
Zacharie Liman-Tinguiri is an American, French, and Nigerien national who was born with sickle cell disease (SCD). Over the course of his life, he experienced more than a hundred hospitalizations and multiple surgeries.
Zacharie earned a Bachelor's degree in Honours Economics with a concentration in Political Science from the University of Ottawa in 2006, followed by a Master's degree in Economics with a specialization in Development Economics in 2008. During his time at the University of Ottawa, he served as the Graduate Student Representative for the Humanities on the University Senate and as a Director on the Graduate Students' Association Board, where he managed the Graduate Student Insurance Plan.
From 2009 to 2012, Zacharie worked at TD Securities in Toronto—first as an Investment Representative, then as a Risk Analyst. While in Toronto, he made history as the first patient to serve as President of the Sickle Cell Association of Ontario (2010–2012). His health challenges, however, prevented him from obtaining Canadian permanent residency, leading him to relocate to the United Kingdom. There, he joined Aon Risk Solutions as a Business Analyst and earned the Certificate in Insurance from the London Insurance Institute in 2014.
Zacharie later pursued an MBA at Cornell University's Samuel Curtis Johnson Graduate School of Management, where he served as Vice President for Capital Markets and Asset Management for the Old Ezra Finance Club, sat on the university's Health Insurance Advisory Committee, and became a Fellow of the Entrepreneurship and Innovation Institute. During his MBA studies, he underwent a pioneering bone marrow transplant at The Johns Hopkins Hospital that successfully cured him of sickle cell disease.
After completing his MBA, Zacharie joined A3 Ventures—the corporate innovation lab of the American Automobile Association—before moving to Amazon in several finance roles. He then joined Google, where he served as a Senior Product Manager focused on large language models and AI systems that help ensure the safety and integrity of Google's advertising inventory.
In 2024, Zacharie trained a large language model on the latest sickle cell disease research and integrated it with Facebook, WhatsApp, and web platforms to deliver accurate, up-to-date information to patients and caregivers. To expand this mission of "making useful and reliable information about sickle cell disease universally accessible," he founded the Sickle Cell Knowledge and Information Network (SCKIN)—a not-for-profit organization dedicated to empowering individuals and communities affected by SCD.
Our Collaborators
RED
Association loi 1901 d'intérêt général créée en 2019. Le RED est un réseau d'experts des centres de référence et de compétence français et africains. D'abord RED-Grand-Paris pour mener son action en région Ile-de-France, le RED s'est étendu sur l'ensemble du territoire national (métropole et territoires ultra-marins). Depuis 2024, le RED a une délégation « Afrique », constituée d'experts de 7 pays d'Afrique pour développer les actions en Afrique.
A French nonprofit association (loi 1901) of general interest created in 2019, the RED is a network of experts from French and African reference and competence centers. First established as RED-Grand-Paris to carry out its work in the Île-de-France region, the RED has since expanded across the entire national territory (mainland France and overseas territories). Since 2024, the RED has an "Africa" delegation, made up of experts from 7 African countries, to develop its activities in Africa. (Translated by AI)
Status: Member
Collaboration: Build AI solutions for providers and patients in Africa.
ASH — Sickle Cell Disease Coalition
The Sickle Cell Disease Coalition (SCDC) is an alliance of diverse stakeholder organizations from around the world uniting to conquer sickle cell disease (SCD). The SCD Coalition was established by the American Society of Hematology (ASH) in 2016 to amplify the voice of the sickle cell stakeholder community, foster collaboration, and improve outcomes for individuals with SCD. Its membership includes an array of organizations and stakeholders interested in sickle cell, such as those involved in public health, research, clinical care, community advocacy, philanthropy, policy, industry, and beyond.
Status: Member organization
Collaboration: Work on AI initiatives for Sickle Cell Disease. Educate fellow coalition members on the risk and opportunities of AI for Sickle Cell Disease care.
SC3 — Sickle Cell Community Consortium
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.
Status: Member organization
Collaboration: Collaborate with other sickle cell disease organizations on AI projects that benefit the community.