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 provides 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.

Recent Activities
The CIP meets regularly to share input on the overall direction of CureSCi and to discuss activities that are being developed and implemented, including:

  • Initiative events
  • Educational materials
  • Outreach materials
  • Clinical trials plans

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

Current Members

Heather Avant
Carley Cole- Cavins, BA
Titilope A. Fasipe, MD, PhD
Maria Rivera
Adrienne Shapiro
Ade Adeyokunnu, MBA
Marjorie DeJoie Brewer, MD
Phill Okwo, MBA
Carolyn Rowley, PhD
Ugonna Anyadike

CIP Member Spotlight

Adrienne Shapiro

What is one piece of advice that you would give to an individual who is just beginning their sickle cell journey?

My one piece of advice for someone beginning their sickle cell journey is to learn as much as you can and find joy and laughter whenever you can.

What would you say to an individual or family that is hesitant, afraid, or just skeptical of gene therapy?

I say to all individuals who are skeptical of gene therapy to make sure that you are working with a trusted source and someone who sees you and your family as a true partner.

Past Members

Clayton Andrews, LAPC

André Harris, MSW