Opening Ceremony / Hosts Welcome

10:00–10:30 AM EST

Join the summit hosts for a warm welcome, introductions, and a preview of the three-day gathering.

Speakers / Presenters: Carley Cole-Cavins, Brenda Green, Cynthia Moorer; sponsor TBD

Moderator / Facilitator: Hosts

Sickle Cell Disease and Military Families

10:30–11:15 AM EST

Explore the unique challenges military families face when navigating sickle cell care, including relocations, continuity of treatment, and building support.

Speakers / Presenters: Hermionne Johnson

Moderator / Facilitator: Carley C.

Sickle Cell Disease and Adoption/Foster Families

11:15 AM–12:00 PM EST

Consider how foster, adoptive, and kinship caregivers can advocate for children living with sickle cell disease and navigate systems of care.

Speakers / Presenters: Hon. Joyce Duchess El

Moderator / Facilitator: Etta C.

Caregiving Without Borders

12:00–12:45 PM EST

Hear international perspectives on caregiver advocacy, access to care, and the power of shared learning across countries.

Speakers / Presenters: Biba Tinga, Selina Olwanda Ogweno, Sabina Afua Boahema Nuako, Kabiru Gambo, Mudashiru Salvador

Moderator / Facilitator: Biba Tinga

Lunch & Learn with Vertex + Icebreaker

12:45–1:30 PM EST

Connect with fellow attendees during an interactive sponsor-supported learning and conversation session.

Moderator / Facilitator: Brenda G.

When the Caregiver Needs Care

1:30–2:15 PM EST

Discuss caregiver stress, grief, and practical ways to protect personal well-being while supporting loved ones.

Speakers / Presenters: Jazmin Kirkman

Moderator / Facilitator: Patrice S.

Visit Our Sponsors

2:15–3:00 PM EST

Explore sponsor resources and learn about organizations supporting the summit.

Moderator / Facilitator: Cynthia M.

Bio-Break

3:00–3:15 PM EST

A scheduled pause to rest and recharge.

Holding It All Together

3:15–4:00 PM EST

Explore resilience, flexible work, and ways to manage everyday responsibilities while living with or supporting someone with chronic illness.

Speakers / Presenters: Emil McGraw

Moderator / Facilitator: Brenda G.

What’s New in SCD Treatments

4:00–4:45 PM EST

Hear personal and advocacy perspectives on emerging and potentially curative sickle cell treatment options and the decisions families face.

Speakers / Presenters: Francita Tador, Caden Major, Toni Yates, Lametra Scott, Maite Rodriguez

Moderator / Facilitator: Carley C.

SCD Treatments: Words from Industry / Treatment Updates. Industry presenters:

4:45–5:30 PM EST

Vertex- Amy Wortring-Senior Director, Cell & Gene Patient Advocacy and Policy & Alliance Development

Novo-Nordisk- Dr. Mudit Chaand, Medical Liaison

Agios, Drewry N. Carter, PharmD, BCPPS, Medical Science Liaison Nikita Lyons Smith, PharmD, Sr. Mgr. Clinical Educator for Sickle Cell Disease

Genetix Biotherapeutics Geraine Willoughby; Associate Director, Patient & Community Education (PACE)

Hear industry representatives discuss treatment developments and patient education. Presentations are informational and do not replace individualized medical advice.

Moderator / Facilitator: Cynthia M.

Closing Reflection + Sponsor Spotlight

5:30–6:00 PM EST

Reflect on key lessons, express gratitude, and consider next steps for community action.

Moderator / Facilitator: Three co-hosts

Wellness Kickoff

10:00–10:30 AM EST

Begin the day with reflection, encouragement, and a renewed focus on caregiver wellness.

Speakers / Presenters: LeeApril Burton

Moderator / Facilitator: Faith D.

Building the Canadian Sickle Cell Disease Registry

10:30–11:05 AM EST

Learn about efforts to build a Canadian sickle cell disease registry and the potential value of patient-centered data.

Speakers / Presenters: Biba Tinga and Dr. Dzifa Dordunoo

Moderator / Facilitator: Biba T.

Your Voice, Your Impact: Shaping the Future of Sickle Cell Research

11:05 AM–11:15 AM EST

Explore how community voices and engagement can help shape research priorities and a more inclusive future for sickle cell care.

Speakers / Presenters: Ricardhy Grandoit and Ayuk Besong Anne-Chantal

Moderator / Facilitator: Biba T.

The Village Matters

11:15 AM–12:00 PM EST

Discover how caregivers can identify, nurture, and lean on practical networks of family, peers, and community supporters.

Speakers / Presenters: Laverne Mickens

Moderator / Facilitator: Patrice S.

Visit Our Sponsors

12:00–12:45 PM EST

Explore sponsor resources and learn about organizations supporting the summit.

Moderator / Facilitator: Brenda G.

Lunch & Learn with Agios + Caregiver Connection Activity

12:45–1:30 PM EST

Connect with fellow attendees during an interactive sponsor-supported learning and conversation session.

Moderator / Facilitator: Cynthia M

Caring Through Crisis

1:30–2:15 PM EST

Learn approaches to preparing for urgent health situations and communicating effectively when a child needs acute care.

Speakers / Presenters: Dr. Kemi Badaki-Makun

Moderator / Facilitator: Daré M.

Beyond One Diagnosis

2:15–3:00 PM EST

Discuss the complexities of navigating overlapping health needs and the importance of informed, coordinated care.

Speakers / Presenters: Dr. Lewis Thomas

Moderator / Facilitator: Etta C.

Young Storytellers Workshop (kids)

2:15–3:00 PM EST

An age-appropriate creative space for children to express experiences, build confidence, and tell their own stories.

Speakers / Presenters: Jenica Leah

Moderator / Facilitator: Laila C.

Art Catharsis Workshop (youth)

2:15–3:00 PM EST

A creative workshop for young people to explore feelings and experiences through art and self-expression.

Speakers / Presenters: Ayoola Olubukola Ogunyimika

Moderator / Facilitator: Jadon L.

Break

3:00–3:15 PM EST

A scheduled pause to rest and recharge.

Young Storytellers Workshop (kids)

3:15–4:00 PM EST

An age-appropriate creative space for children to express experiences, build confidence, and tell their own stories.

Speakers / Presenters: Jenica Leah [also listed earlier]

Moderator / Facilitator: Laila C.

Art Catharsis Workshop (youth)

3:15–4:00 PM EST

A creative workshop for young people to explore feelings and experiences through art and self-expression.

Speakers / Presenters: Ayoola Olubukola Ogunyimika [also listed earlier]

Moderator / Facilitator: Briana F.

SCD and Hearing Loss

3:15–4:00 PM EST

Learn about hearing, balance, and related concerns that may affect people living with sickle cell disease.

Speakers / Presenters: M. Dawn Nelson; KW Young listed in speaker area

Moderator / Facilitator: Patrice S.

Caregiver Stories That Heal

4:00–4:45 PM EST

Caregivers share lived experiences, lessons, and moments of connection that can encourage other families.

Speakers / Presenters: Daré Makun, Carla Coffer, Glenn Coffer, Peggy Robinson

Moderator / Facilitator: Brenda G.

Making Mental Health and Wellness a Real Priority

4:45–5:30 PM EST

Explore practical ways to prioritize emotional health, recognize stress, and seek support without guilt.

Speakers / Presenters: Tiffiny Turner

Moderator / Facilitator: Carley C.

Interactive Evening Activity + Gratitude Circle

5:30–6:00 PM EST

Connect with fellow participants through reflection, gratitude, and an interactive closing activity.

Marvin B. Figueroa serves as the Virginia Secretary of Health and Human Resources for the Commonwealth of Virginia

9:30–10:00 AM EST

Hear a Virginia health leadership perspective on sickle cell advocacy, policy, and the Queen Candis Act.

Moderator / Facilitator: Carley Cole-Cavins

Morning Centering Activity

10:00–10:30 AM EST

Start the day with a guided moment of reflection and grounding before the day’s sessions.

Speakers / Presenters: LaDonna Jackson

Moderator / Facilitator: Cynthia M.

Organ Damage

10:30–11:15 AM EST

An accessible discussion of how sickle cell disease can affect organs and why monitoring and preventive care matter.

Speakers / Presenters: Christina Abrams, MD

Moderator / Facilitator: Brenda G.

Featured Sponsor Spotlight / Special Session

11:15 AM–12:00 PM EST

Learn about the featured sponsor and resources relevant to the sickle cell community.

Speakers / Presenters: Pfizer, Jon Penney, National Community Sickle Cell Thought Leader Engagement Lead

Moderator / Facilitator: Carley C.

Vision-Setting: What Support Looks Like Moving Forward

12:00–12:45 PM EST

Reflect on the support caregivers need and identify meaningful personal and community goals for the future.

Speakers / Presenters: Kezia Marcano

Moderator / Facilitator: KW Young

SCD Bone Health

12:45–1:30 PM EST

Learn about bone pain and skeletal complications associated with sickle cell disease and questions to discuss with healthcare teams.

Speakers / Presenters: Jahnavi Gollamudi

Moderator / Facilitator: Etta C.

Visit Our Sponsors

1:30–2:15 PM EST

Explore sponsor resources and learn about organizations supporting the summit.

Moderator / Facilitator: Carley C.

Finding Your Village (separate rooms)

2:15–3:00 PM EST

Join small-group conversations to meet other attendees, share experiences, and build lasting support connections.

Speakers / Presenters: Faith Davis, KW Young, Ayana Johnson, Brenda Green

Moderator / Facilitator: Carley C. listed among facilitators

Break

3:00–3:15 PM EST

A scheduled pause to rest and recharge.

Allies in Action

3:15–4:00 PM EST

Explore how community allies, civic groups, and advocates can work alongside caregivers to improve awareness and support.

Speakers / Presenters: Dorian Archie and Delicia Barnett

Moderator / Facilitator: Carley C.

The PRESENCE Study

4:00–4:45 PM EST

Learn about research exploring digital cognitive behavioral therapy and peer support for chronic pain among teens and young adults with sickle cell disease.

Speakers / Presenters: Hettie Fleming, Dr. Kadeem Gayle

Moderator / Facilitator: Cynthia M

Closing Ceremony / Words of Encouragement + Call to Action

5:00–5:30 PM EST

Reflect on key lessons, express gratitude, and consider next steps for community action.

Speakers / Presenters: three co-hosts

Moderator / Facilitator: Three co-hosts

Community Send-Off

5:30–6:00 PM EST

Close the summit with a shared commitment to staying connected and supporting one another.

Speakers / Presenters: Carley Cole-Cavins

Carley Cole-Cavins (Elle Cole)

Co-founder of the Sickle Cell Caregiver Summit and founder of Cleverly Changing, LLC, Carley is an author, health literacy educator, speaker, and sickle cell caregiver advocate. As the mother of a daughter with sickle cell disease, she works with healthcare organizations and community partners to make medical information understandable and ensure caregiver voices inform decisions.

Brenda Green

Brenda founded The B Strong Group with her husband, Patrick, in honor of their son Braden, who lives with sickle cell disease. An environmental engineer by profession, she works to strengthen caregiver education, blood donation awareness, and community partnerships. She believes families thrive when they have a strong village of support.

Cynthia Moorer

Cynthia is the founder and CEO of Discoveringmoorer2life, Inc. A healthcare professional with more than 30 years of nursing and clinical leadership experience, she advocates for people affected by chronic illness, rare diseases, mental health challenges, and health disparities. Her work combines caregiver experience, community education, research, and health equity.

Hermionne Johnson

Hermionne Johnson, MSN, BSN, RN-BC, is a healthcare leader, educator, military veteran, and CEO and co-founder of Ayana’s Hope Cells. As a caregiver in a military family, she champions health equity and support for families managing chronic illness. She serves in several rare disease, hemoglobinopathy, and family advisory roles.

Hon. Joyce Duchess El

Joyce Duchess El, MBA, is the founder and CEO of Journeys by Grace Global Missions, Inc. A longtime humanitarian and caregiver advocate, she brings more than three decades of experience in kinship caregiving. Through the Kincare Circle Initiative, she supports grandparents, foster parents, and relatives caring for children with chronic conditions and disabilities.

Biba Tinga

Biba Tinga is CEO of the Global Alliance of Sickle Cell Disease Organizations and president of the Sickle Cell Disease Association of Canada. A caregiver to her adult son, she advocates for equitable care, stronger research, and patient-centered policies. Her leadership connects sickle cell organizations and communities across countries.

Selina Olwanda Ogweno

Selina is CEO of the Children Sickle Cell Foundation Kenya and a longtime advocate for children and families affected by sickle cell disease. Inspired by her son’s diagnosis, she has led efforts to strengthen education, specialized care, and community support in Kenya. She also serves in national and regional health advocacy roles.

Sabina Afua Boahema Nuako

Sabina founded Worthborns Children Charity Foundation in Ghana. She advocates for children with sickle cell disease and other vulnerable children through education, practical family assistance, and community outreach. Her work emphasizes genotype awareness, newborn screening, stigma reduction, and support for underserved and rural families.

Kabiru Gambo

Kabiru is a public health professional and registered community health extension worker from Nigeria. His experience includes clinical work involving people with sickle cell disease and service as a program officer on health-related projects. He brings a community health perspective to conversations about caregiving and access to care.

Mudashiru Salvador

Mudashiru is a father and caregiver living in Germany. After his son’s sickle cell diagnosis through newborn screening, he joined a national self-help group to find information and support. Now a vice chairman of the organization, he advocates for caregiver empowerment, stronger community connections, and better relationships with healthcare teams.

Jazmin Kirkman

Jazmin is a licensed practical nurse with 15 years of clinical experience, an entrepreneur, and founder of Lymphatic Matrix & Co. Her brother’s experience with sickle cell disease informs her advocacy for patients and caregivers. She speaks about self-care, grief, caregiver stress, and the importance of making room for one’s own well-being.

Emil McGraw

Emil is a business technology consultant, entrepreneur, and founder of Prolific Solutions in Tuscaloosa, Alabama. Living with sickle cell disease has shaped his approach to resilience and flexible work. He helps entrepreneurs and small businesses improve digital operations while advocating for practical income opportunities and independence for people navigating chronic illness.

Francita Tador

Francita is a mother, caregiver, and person living with HbSS sickle cell disease. She cares for a son with sickle cell disease and a daughter with sickle cell trait. Her experience with gene therapy and family advocacy gives her a personal perspective on treatment decisions, resilience, and supporting others in the sickle cell community.

Caden Major (C-M)

Caden is a college student studying health sciences and an advocate living with sickle cell disease. He was the first pediatric patient in Florida to receive an FDA-approved gene therapy for the condition. By sharing his experience, he hopes to help families better understand treatment journeys and encourage others navigating difficult decisions.

Toni Yates

Toni is founder and president of Sickle Cell Is Curable, a nonprofit that educates families about potentially curative treatments. As the mother of two children born with sickle cell disease, she has navigated both bone marrow transplantation for her son and gene therapy for her daughter. She helps families find information and treatment resources.

Dr. Lametra Scott

Lametra Scott, PharmD, CCHP, is a pharmacist, educator, healthcare leader, and founder of Breaking The SSickle Cell Cycle Foundation. Her work focuses on sickle cell education, community outreach, health equity, and access to resources. She encourages families to turn knowledge into informed action and advocacy.

Maite Rodriguez

Maite is a mother, social worker, educator, author, and advocate whose daughter lives with sickle cell disease. She supports children and families managing chronic illness and disabilities and serves on the board of Sickle Cell Prodigy. She is particularly committed to accessible sickle cell education and bone marrow transplant advocacy for Hispanic communities.

LeeApril “April” Burton

April is a caregiver, advocate, and 2026 CSUB Athletics Hall of Fame inductee. As the mother of an adult son living with sickle cell disease, she shares lessons from navigating medical care, the transition to adult services, and family advocacy. She encourages caregivers to recognize the value of their voices and prioritize their own well-being.

Dr. Dzifa Dordunoo

Dzifa Dordunoo, PhD, RN, is a nurse educator, researcher, and scholar with clinical experience in general medicine, coronary care, and outpatient settings. Her teaching and research connect global health, health anthropology, and quality of care. She focuses on improving access to health services and understanding factors that shape patient outcomes.

Ricardhy Grandoit

Ricardhy Grandoit is a Global HR Strategic Leader, founder of Elevate Impact Inc., and former Major League Baseball executive. With 10+ years driving DE&I, employee relations, and social impact, he holds advanced degrees from Northeastern University and SHRM-SCP certification. Born in Haiti and based in the U.S., Ricardhy sits on national nonprofit boards empowering inclusive communities, providing access to health services and understanding factors that shape patient outcomes.

Ayuk Besong Anne-Chantal

Ayuk Besong Anne-Chantal is Global Head of Sickle Cell Community Engagement, Elevate Impact Inc. She s a Cameroonian-born international communications expert with 20+ years’ experience in strategic media, public affairs, and digital advocacy. An SCD patient advocate, podcast host, app creator (SCD Champs), and author, she serves on the World Pulse Advisory Network, UMASCCO Executive Board, and manages SOuL Just Be E-Mag alongside leading A&A Consulting.

Laverne Mickens

Laverne is a veteran educator, mother of five, scholarship and college adviser, and longtime member of Delta Sigma Theta Sorority, Inc. She has helped students secure substantial scholarship and grant support. She brings an education and community-building perspective to helping caregivers identify and strengthen their support networks.

Dr. Kemi Badaki-Makun

Kemi Badaki-Makun is a physician and researcher focused on the care of acutely ill or injured children. Her research includes pediatric resuscitation and earlier diagnosis and management of acute complications of sickle cell disease, including acute chest syndrome. She brings practical insight into preparing for and responding to medical emergencies.

Dr. Lewis Thomas

Lewis Thomas is a UK-trained medical doctor, sickle cell advocate, and founder of Sickleverse Ltd. Living with sickle cell disease himself, he combines medical knowledge and personal experience to make complex health information understandable. Through digital education and community resources, he helps people recognize complications and advocate for better care.

Jenica Leah

Jenica Leah is a speaker, author, and advocate living with sickle cell disease. She has spent more than two decades raising awareness of chronic illness and invisible disabilities. A founder of nonprofit initiatives and former president of the European Sickle Cell Federation, she uses storytelling to empower children, families, and the wider community.

Ayoola Olubukola Ogunyimika

Ayoola is a creative researcher, poet, multimedia artist, health coach, and sickle cell advocate. Through Healing Through Artistic Mediums LLC, she explores how poetry, visual art, and other creative practices can support expression and reflection. Her work draws on personal experience, cultural identity, and more than 15 years of service to the community.

Dr. M. Dawn Nelson

M. Dawn Nelson, PhD, CCC-A, is a professor in Central Michigan University’s Doctor of Audiology Program. Her research examines dizziness, balance problems, falls, and hearing loss in people living with sickle cell disease. She brings expertise in hearing and vestibular assessment and how these concerns affect daily life.

KW Young

KW Young is a multimedia artist, father, grandfather, and sickle cell advocate from Trinidad and Tobago. Living with HbSC disease, he draws on decades of personal experience to encourage self-education, empowerment, and community support. He has also cared for family members and believes sharing stories can help others.

Daré Makun

Daré is a father, husband, and caregiver to a child with HbSC sickle cell disease. He co-founded Sickle Cell & Me to connect families with practical tools and support. A project management consultant and author, he advocates for honest conversations about the emotional experiences of caregiving fathers.

Carla Coffer, RN

Carla is a registered nurse, mother of three, and caregiver to an adult daughter living with sickle cell disease. With more than 30 years in nursing, she combines clinical and family experience in her advocacy. Her work emphasizes reproductive health, pregnancy, maternal care, and community education.

Glenn Coffer

Glenn is a husband, father, and longtime caregiver and advocate. His daughter was diagnosed with sickle cell disease shortly after birth. He and his wife have supported her through 28 years of care and advocacy. He brings a father’s perspective to the challenges and lessons of family caregiving.

Peggy Robinson

Peggy is a mother, grandmother, and sickle cell trait carrier who has cared for her daughter living with sickle cell disease and her granddaughter. After more than 30 years with the United States Postal Service, she retired in 2010. She enjoys travel, dancing, and time with family and friends.

Tiffiny Turner, LMFT

Tiffiny is a licensed marriage and family therapist and founder of You Are Worthy Therapy, Training & Consultation. Her experience spans inpatient, outpatient, and community mental health care, as well as teaching and clinical supervision. As a clinician and mother, she advocates for practical support and emotional wellness for caregivers.

The Honorable Marvin B. Figueroa, Secretary of Health and Human Resources, Commonwealth of Virginia

Marvin B. Figueroa is Virginia’s Secretary of Health and Human Resources under Governor Abigail Spanberger. A champion for equitable care, he helped advance Virginia’s landmark [Queen Candis Act](https://www.governor.virginia.gov/newsroom/news-releases/2026/june-releases/name-1119499-en.html), expanding sickle cell education, provider training, and coordinated specialist networks. A Vanderbilt and Harvard graduate, his career includes serving as Virginia’s Deputy Health Secretary and HHS Intergovernmental Affairs Director.

LaDonna Jackson

LaDonna Jackson is an actress, media host, sickle cell advocate, and caregiver. She founded Conversations with LaDonna in 2020 to spotlight creative professionals and share stories from sickle cell warriors and caregivers worldwide. Her work includes television, film, interviews, and speaking engagements. She balances her creative career with caring for her son, who lives with sickle cell beta thalassemia.

Dr. “Tina” Abrams

Christina Abrams, MD, is pediatric sickle cell director at the Medical University of South Carolina. A South Carolina native, she completed medical training at the University of South Carolina, the University of Tennessee Health Science Center, and the University of North Carolina. Her work focuses on pediatric sickle cell care.

Mrs. Kezia Marcano

Mrs. Kezia Marcano is a counselor based in Trinidad and Tobago and founder of the Trinidad and Tobago Depression and Suicide Foundation. Through her counseling and foundation leadership, she works in the field of mental health and community support. She brings a mental wellness perspective to conversations about caregiving, personal well-being, and finding support.

Dr. Jahnavi Gollamudi

Jahnavi Gollamudi, MD, is a hematologist and research assistant professor at the University of Cincinnati. Her research focuses on bone pain and skeletal complications in sickle cell disease. She has received research support and recognition for investigating the biological factors behind sickle cell-related bone disease.

Faith Davis

Faith Davis, MSW, LCSW-C, LCSW, LCAS, is a clinical social worker and therapist with experience in social services, community mental health, hospitals, and psychotherapy. Her specialized training includes trauma and substance use disorders. She brings a mental health perspective to caregiver support and community connection.

Ayana Johnson

Ayana is a University of Alabama student studying microbiology on a pre-medical track, a sickle cell advocate, and founder of Ayana’s Hope Cells. Through her nonprofit, she supports hospitalized children, especially those with sickle cell disease. She is also involved in student leadership, dance, music, and youth policy advocacy.

Dorian Archie

Dorian is a community organizer, motivational speaker, and sickle cell advocate who lives with the disease. A Howard University graduate, he has worked in advocacy and public service, including on Capitol Hill. He serves as an emerging markets manager with the American Red Cross, connecting professional service with community engagement.

Lady Delicia Barnett

Delicia is a leader in Top Ladies of Distinction, Inc., Prince George’s County Chapter, and a longtime sickle cell advocate. She previously chaired the chapter’s sickle cell efforts and currently serves in chapter and area leadership roles. She is also executive producer of the docuseries Sickle, which raises awareness of the condition.

Dr. Kadeem Gayle

Dr. Kadeem Gayle lives with sickle cell disease and has more than a decade of experience in patient advocacy, research, and education. A consultant, published poet, and speaker, he addresses health disparities, community engagement, and the experiences of people with SCD. He earned his Doctor of Medical and Health Humanities from Drew University and advocates for improved healthcare practices and policies.