Community Input Panel | Cure Sickle Cell

Zahara & Kesha Weeks

The Community Input Panel was launched in 2020 to help support two-way dialogue between the Initiative and the patient community.

About the Community Input Panel (CIP)

The Cure Sickle Cell Initiative (CureSCI) is a collaborative, patient-focused research effort designed to find safe and effective genetic-based cures for sickle cell disease. An important part of CureSCi is the inclusion and active participation of people living with SCD who help to guide research, as well as education and engagement efforts. The CIP has provided input on the direction of the Initiative, and members engage in conversations with leadership to help communicate needs and identify opportunities in gene therapies for SCD.

Activities

The CIP provided input on the overall direction of CureSCi and discussed activities, including:

Initiative events
Educational materials
Outreach materials
Clinical trials plans

The CureSCi Patient Engagement Journey document details the involvement of those living with sickle cell disease from before the launch of the Initiative to today.

Members

CIP members included diverse representation including race, gender, age, geographic location, and their experiences. They were selected based on their knowledge and ability to represent the needs of the sickle cell patient and caregiver community. Members were engaged, involved, and offer a diversity of opinion and expertise.

Members

Heather Avant

Heather Avant

CIP CHAIR

Heather Avant is a passionate patient advocate of thirty-five years thriving with sickle cell anemia. She serves as the Chair of the Community Input Panel as well as the Co-Chair of the UT Southwestern, American Society of Hematology Community Advisory Board. Heather is also the Co-Chair of the Sickle Cell Community Consortium’s Sickle Cell Mental Health and Wellness Initiative.

While Heather is a devoted national advocate for sickle cell disease, it is not her only passion. She is also a full-time business owner and photographer for Artfully Avant, LLC. Through her art in advocacy, Heather is the curator of The Unbreakable WARRIOR Project, showcasing what it means to thrive into adulthood with sickle cell. Heather has a strong desire to confront bias and change the narrative that people living with sickle cell disease often encounter. She believes that the tools for change come from the experiences that she has lived.

Contact: heather.l.avant@gmail.com

Ade Adeyokunnu, MBA

Ade Adeyokunnu, MBA

Ade Adeyokunnu was born in Nigeria and grew up in Maryland. He is a former technology consultant and currently lives in the Philadelphia area, where he works in health marketing.

Ade has always been passionate about sickle cell advocacy for as long as he can remember. In 2009, this passion led him to create sikcell.com, the first online community for people living with sickle cell disease. He believes building a support network of people who understand what you are going through is crucial when you are living with what can feel like an isolated and often misunderstood, chronic condition like SCD.

He loves traveling, learning, and spending time with his amazing wife.

Contact: dotun2k@gmail.com

Carley Cole- Cavins, BA

Carley Cole- Cavins, BA

Carley Cole-Cavins is a writer, motivational speaker, social media strategist, and mother of twin daughters. After she and her husband learned that their daughter had sickle cell disease, she wished there was a guide to help parents and kids understand how the condition affects a person's body. Based on her experience, she authored several books for children living with sickle cell disease, including: The Ultimate Sickle Cell Activity Book, ABCs of Sickle Cell Disease, A Sickle Cell Coloring Book for Kids, Aprendiendo Sobre la Enfermedad de Células Falciformes, and Un Libro Para Colorear de Células Falciformes Para Niños.

Carley is not only a parent advocate for sickle cell disease, but also for type 1 diabetes. She serves as a member of the Institute for History & Healing, the Children's National Hospital Community Advisory Board, Sick Cells Ambassador Program, Amplify Sickle Cell Voices International Inc., and is an AllStripes Rare Disease Ambassador. In 2021, Carley partnered with the Sickle Cell Community Consortium to co-host the first annual Sickle Cell Caregiver Summit. She is committed to raising awareness about genetic disorders and autoimmune diseases to help improve the quality of life for people living with these illnesses.

Contact: cleverlychanging@gmail.com

Marjorie DeJoie Brewer, MD

Marjorie DeJoie Brewer, MD

Dr. Marjorie Dejoie Brewer is the owner of MAD Fit, a Medical Consulting and Wellness & Health company. She also currently serves as Medical Director of Hemoglobinopathies in Global Medical Affairs and Global Strategist at Vertex Pharmaceuticals, as well as Medical Director for the Sickle Cell Disease Association of Delaware. She is the Co-Chair of the Sickle Cell Community Consortium’s Sickle Cell Mental Health and Wellness Initiative, a medical consultant to the Sickle Cell Disease Association of America, an ambassador to Sick Cells, and group leader for Meditation for Leadership.

As a patient of sickle cell disease, Dr. Dejoie is a firm proponent and practitioner of comprehensive and preventative health and wellness planning. Over the past 10 years she has developed relationships and collaborations with various organizations and health initiatives in the rare disease space. Dr. Dejoie puts an emphasis on engaging with advocacy groups and working in the community, so patients and their families feel connected, educated, and that they are at the center of conversations along their health-care journey.

Contact: madfitbody@gmail.com

Titilope A. Fasipe, MD, PhD

Titilope A. Fasipe, MD, PhD

Dr. Titilope Fasipe is a pediatric hematologist living with sickle cell disease. She serves as Co-Director of the Texas Children’s Sickle Cell and Thalassemia Program and Assistant Professor of Pediatrics in Hematology/Oncology at Baylor College of Medicine. She is passionate about education and promoting public health strategies to address the psychosocial barriers and health complications of individuals with sickle cell disease. Dr. Fasipe is actively involved in various sickle cell-focused community and policy efforts aimed at understanding and addressing these challenges.

Dr. Fasipe has been appointed to sickle cell advisory committees of the Texas Department of State Health Services and currently serves on their Newborn Screening Advisory Committee, and also chairs the Sickle Cell Task Force. Her professional memberships include: the American Academy of Pediatrics, the Heartland-Southwest Sickle Cell Disease Network, the American Society of Hematology, and the American Society of Pediatric Hematology/Oncology.

Contact: titilope.ishola@gmail.com

Phill Okwo, MBA

Phill Okwo, MBA

Phill Okwo has spent over 20 years passionately representing the voice of the global sickle cell disease patient community. As someone living with sickle beta zero thalassemia, Phill is a fierce sickle cell warrior, advocate, and tribe builder who takes pride in finding "opportunity in crisis" and encouraging others to do the same. He has helped to raise sickle cell awareness as a patient, provider, pharma, and public health educator through numerous presentations and lectures. Phill has been instrumental in advancing sickle cell related policy and legislation.

Phill has worked to champion stories of the sickle cell experience through various media, including the Warriors Rising documentary and Blood Brothers and Cheat Codes podcasts. He has also served the sickle cell community as a board member of the Sickle Cell Association of Houston and the Sickle Cell Reproductive Health Education Directive (SC-RED).

Phill is the father of a 6-year-old son, Theophilus and 3-year-old daughter, Chimamanda. He is based in Atlanta, Georgia.

Contact: phillip.okwo.mba@gmail.com

Ugonna Anyadike

Ugonna Anyadike

Baltimore-born Ugonna Anyadike’s passion for the arts shine through in everything he does as an emcee, producer, and engineer. Whether he’s working at Morgan State University in the Fine Arts building or handling a plethora of music duties as the artist Android No. 23, he’s constantly surrounded by or inspired by art. Anyadike’s journey has had its fair share of battles but what has always stayed consistent is his love to create. Being the only member of his nuclear family to be diagnosed with Sickle Cell Disease, Ugonna looks to spread knowledge and perspective of his experience after undergoing an over two-year process for a bone marrow transplant.

In 2020, Ugonna was offered an opportunity to participate in a study conducted by the National Institutes of Health. He prepared for the bone marrow transplant while working on his full-length debut album ‘Vetre Renee’ with Virginia based producer Garcon. In 2022, he underwent the bone marrow transplant and since then has been trying to enjoy life. He’s currently working on his full-length album with a different lease on life and music as a whole. He feels that in some ways he has been reinventing himself, his life and everything surrounding it.

Ugonna is focused on helping build the Baltimore music community back better than ever. He also wants to do his part regarding the treatment and cure of SCD by being a contributing member of the Community Input Panel. Ugonna wants people to walk away with knowledge and perspective more than anything else. “I spent my whole life believing there was no cure for sickle cell and I spent the last ten years very much believing that my days were numbered and that I probably wouldn't make it out of my 30s. In the span of two years all of that changed and I can live a very different life than what I had originally planned for.”

Contact: ugonnaanyadike@gmail.com

Carolyn Rowley, PhD

Carolyn Rowley, PhD

Dr. Carolyn Rowley is the Founder and Executive Director of Cayenne Wellness Center, a non-profit organization dedicated to health and wellness. In her role as Executive Director, she specializes in nutrition, health psychology, and treating patients and their families with sickle cell disease. In 2005 Dr. Rowley also began another non-profit organization, The Machao Orphanage Foundation, because of her missionary experience in Kenya, East Africa.

She currently teaches at UCLA Extension and has devoted half of her clinical psychology practice to the needs of children, adults, and their families with sickle cell disease. She is a committed environmentalist and vegan and highlights the importance of nutrition in dealing with sickle cell disease. She has served as a panel member focusing on successfully living with sickle cell disease for numerous meetings for the general public, as well as medical professionals.

Where there is music, art, beach, waterfalls, and sun, you will find Dr. Rowley enjoying a few of her favorite things. Her faith is what has sustained her, makes her whole, and daily orders her steps.

Contact: carolyn@cayennewellness.org

carly

CIP Member Spotlight

Carolyn Rowley

If you were on a team planning a gene therapy clinical trial, what do you think are the most important factors to consider for following up with patients after the therapy?

It’s critical to take a holistic approach when following up with patients after gene therapy. Key factors to consider include:

• Monitoring for Physical Side Effects – Regular follow-up is essential to identify any short- or long-term side effects, including potential immune responses, organ-related complications, or unexpected health changes.

• Assessing Mental and Emotional Well-Being – Patients may experience anxiety, uncertainty, or shifts in identity following such a life-altering treatment. It's important to screen for depression, anxiety, or PTSD, and provide ongoing mental health support.

• Evaluating Quality of Life – Beyond physical health, it’s important to understand how the therapy has impacted the patient’s daily life, energy levels, relationships, and overall sense of well-being.

• Ongoing Education and Communication – Patients should continue to receive information about what to expect over time, updates in research, and opportunities to engage in support communities or advocacy, if they choose.

Past Members

Andre

André Harris, MSW

Clayton

Clayton Andrews, LAPC

Adrienne

Adrienne Shapiro

Maria

Maria Rivera