Webinar: Gene Therapy for Sickle Cell Disease: A Look Into the Patient Journey by Zealic Health

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About This Webinar

Join us for a meaningful discussion aimed to demystify the patient experience of gene therapy for patients affected by Sickle Cell Disease and their caregivers.

The session will feature a knowledgeable Patient Educator from Vertex Pharmaceuticals, who will discuss the treatment journey for Vertex's newly approved gene therapy to treat Sickle Cell Disease. Alongside her, an enthusiastic Patient Advocate and the current president of the Sickle Cell Thalassemia Patient Network will share her valuable perspective on the role of community and support networks in embracing new therapeutic options.

Ginger Davis

Speaker - President, Sickle Cell Thalassemia Patients Network

Teresa Ginger Davis has been a life-long health and education advocate, and spokesperson for sickle cell disease. She has more than 25-years of experience in the health industry.

Prior to starting her development and communications consultancy UNTOLD Story LLC in 2016, she was an allied healthcare professional – working as a genetic councilor, health educator and advocate. Davis has participated in developing national health policy with organizations like NYMAC (NY-Mid Atlantic Genetics Council), and the NYS Sickle Cell Advisory Consortium. As the former Director of Outreach and Development of the Sickle Cell Thalassemia Patients Network (SCTPN) she created, implemented, and coordinated the organization’s public education program activities, in addition to implementing a diversified fundraising program.

Through SCTPN, Ms. Davis applied her biology and naturopathic health education towards working with eighteen New York City hospitals on HRSA grants to deliver care coordination and transitions services for pediatric hematology clients and their families, also care coordination and referral to needed services for adults lost to care after transitioning from pediatrics.

SCTPN is one of four NE CBOs to be awarded the HRSA Newborn Screening Follow-Up multiyear grant and is the lead CBO for the NYS Health & Hospital Services Collective Impact Initiative to End the Stigma Against Sickle Cell Disease. Ginger is now leading SCTPN as its newly elected president. Her two top priorities for the next 3-years is to:

1. Driving the organization’s expansion statewide by establishing affiliates and chapters in Staten Island, Long Island, Albany, Buffalo, Rochester and Syracuse; and US Virgin Islands.

2. Collaborate with other sickle cell organizations and other health-focused CBOs to increase public education and testing for sickle cell trait (SCT) in the northeast region.

Sickle Cell Thalassemia Patients Network (SCTPN) was founded in 1989 at Brooklyn Jewish Hospital (now known as Interfaith Medical Center) located in Brooklyn, NY, as an adult and parent support group for individuals with inherited blood disorders.

SCTPN was incorporated in NYS, April 15, 1992, as a charitable organization. The organization provides education, advocacy, referral services, and support interactions for individuals and families living with sickle cell disease, thalassemia (Cooley’s Anemia), and other inherited blood
disorders.

Farah Gaillard, NP

Speaker - Patient Educator, Vertex Pharmaceuticals

Farah Gaillard, NP is a Patient Educator at Vertex Pharmaceuticals. As a Patient Educator, Farah serves as an educational resource – providing information and tools to those living with or affected by Sickle Cell Disease to have meaningful conversations with their healthcare providers – while also actively listening and learning about the community’s needs. Prior to working at Vertex, Farah worked as a Hematology/Oncology registered nurse specializing in Bone Marrow Transplant for 9 years at several hospitals in New York City.

Nicole Calloway, MS, RD, LDN

Moderator - Patient Advocacy Director, Zealic Health

As the Patient Advocacy Director at Zealic Health, Nicole plays an active role in liaising with patient groups. Her mission is to revolutionize the engagement strategies of life science organizations, focusing on greater inclusivity and empowering patients to lead in their own health journey. Drawing on her comprehensive experience as a Registered Dietitian in both inpatient and outpatient settings, Nicole facilitates deeper and more effective communication pathways between patients, healthcare providers, and brands.