A new executive team officially began its role on October 4, 2021. The Sickle Cell Thalassemia Patient’s Network (SCTPN) welcomes Teresa Ginger Davis, President; Richelet “Rich” Jean, Vice President; and Tashiika McClain, Treasurer. Jocelle Marius is the Assistant Treasurer, Ashley Thompson, Assistant Secretary. Chinomnso Nnodum is the Director of Outreach and Development. Returning are Vivian Okwuagwu, Secretary, and Mark Goodwin, Esq, LCSW, who continues as the Program Director.
In addition, SCTPN also welcomes a new members to the Board of Advisors – Bryant Daley, Lead Manager, Corporate Development & Business Strategy, AT&T Inc.
“I’m excited about our new team. We have talented people with a wealth of skills, and everyone is committed to expanding SCTPN’s mission,” said Ginger Davis.
In 2022, the directors will continue a strategic development plan initiated last summer to develop social support for individuals living with sickle cell disease (SCD) and their families. The strategic plan includes establishing affiliates and chapters in Long Island, Staten Island, and several counties Upstate. The first operations affiliate — Sickle Cell Advocates of Rochester (SCAR), led by co-directors Gladys Magee, and Stephanie Ramos, began in August. Next in line is SCTPN’s first chapter in Albany, NY, expected to be operational in spring 2022.
“We are canvassing community advocates and leaders in Long Island and Staten Island to chapters. Both of these areas have growing populations of families living with sickle cell”, explains Davis.
In August, SCTPN received word that it was awarded a second multi-year HRSA (Human Resource Services Administration) Newborn Screening Follow Up grant. With this grant, SCTPN will train and hire more Community Health Workers (CHW) and enlarge its adult Care Coordination program statewide. One of the top priorities of this funding is to identify and reduce the number of SCD adults lost to care by 30 percent over 5-years. Most adults living with sickle cell disease are lost to care after transitioning from pediatrics into adult medical care. Systemic racism and bias against sickle cell disease and the people who are perceived to be affected by it have resulted in medical neglect and other healthcare disparities.
Program director Mark Goodwin developed the Transitions program model with funding and resources from PCORI (Patient-Centered Outcomes Research Institute). “We are in the fourth year of Transitions at a hospital in the Bronx, and look forward to collaborating with hospitals in Manhattan and Brooklyn next year, said Goodwin. The program helps guide teens aging out of pediatrics and their parents to navigate adult medical care. We take the teens on a tour of the adult med floors, introduce them to physicians, and make sure they know how to do things like make appointments”. Once transitioned, the clients are followed for 3-years to ensure that their continuity of care is maintained.
SCTPN was selected to be the lead community-based organization (CBO) on several other initiatives including, the Collective Impact Project: To End the Stigma Against Sickle Cell Disease. Kenneth Rivlin, MD, Director of Pediatric Hematology at Jacobi Hospital in the Bronx, is the primary investigator of the Collective Impact initiative. Dr. Rivlin and Toni Di Nicola, NP, are coordinating the delivery of the project at 214 Health and Human Services facilities (public hospitals) statewide.
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