The Community Educational Forum on Sickle Cell Disease will be held in the Edison O. Jackson Auditorium, Medgar Evers College, Saturday, October 27, 2018
The Sickle Cell Thalassemia Patients Network (SCTPN) and CUNY/Medgar Evers College are hosting a Community Educational Forum on Sickle Cell Disease (SCD) on Saturday, October 27th, in the Edison O. Jackson Auditorium 1638, Bedford Avenue, Crown Heights, 10:00 am to 4:00 pm. Registration starts at 9:00 am. The Public Outreach and Education Series (POES) presents regular events that are free and open to the public in efforts to raise public awareness of sickle cell disease. Medgar Evers College (MEC) is partnering with SCTPN to host two public forums. The first on October 27th targets students in health sciences, human resources, and public administration. Healthcare professionals, health trade organizations and associations have also been invited to attend. The second forum will be dedicated to the MEC student body.
Presenting at this POES Forum Tartania Brown-Newton, MD, speaks on Sickle Cell 101, Doris Louissant, Board Member of Candice Sickle Cell Fund discusses What Do You Know About Hydroxyurea — Pre & Post Test, Mark Goodwin, Esq., MSW, LCSW, SCTPN Board Advisor and HRSA Project Direct will give updates on Tools for Effective Transition — Pediatric to Adult Care. Author, businesswoman, and SCD advocate Teresa Ginger Davis moderated the forum.
There is much movement nationwide around sickle cell disease. From the National Institute of Health, National Heart, Lung and Blood Institute (NIH/NHLBI) ECHO program, to the US Food & Drug Administration (FDA) Rare Disease and Orphan Drug Status, which has helped pharmaceutical companies small and large to focus on the development of genomic and precision medical research to develop medicinal therapies specifically for SCD and its related complication. Inforamtion will be provided on the Emmaus Life Sciences product Endari, a new medication developed specifically for treatment of sickle cell, Endari was approved by the FDA in July 2017, and is available on the retail market nationally.
Sickle Cell Disease is a genetically inherited blood disorder that is characterized by a group of abnormal gene traits that affect the hemoglobin molecule in red blood cells. It is a chronic, painful and debilitating metabolic disorder that is prevalent worldwide and affects people across racial and ethnic lines. Due to research and therapies like prophylactic penicillin for children ages one month to 5-years, and Hydroxyurea, the life expectancy has dramatically increased over the last two decades from 20-years of age to 60. Many adults living with sickle cell are reaching the ages of 70 and 80-years.
The Sickle Cell Thalassemia Patients Network started as an adult patient support group at the former Brooklyn Jewish Medical Center (now Interfaith?). As the membership grew over the first two years, it became apparent that the community needed an organization to provide support services to individuals living with SCD and their families. Over the last 29-years, the mission has grown to include providing support services to medical professionals, medical facilities, institutions of education and other stakeholders. SCTPN helps medical professionals, educators and employers to understand the nuances of how sickle cell disease impacts each individual specially and its overall impact on affected families and communities.
The nationally recognized SCTPN is based in the Crown Heights section of Brooklyn, with an office at 1139 St. John’s Place. To register for the Community Educational Forum email info@sctpn.org or call 347–533–8485. Visit the SCTPN website at http://sctpn.net.
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