Maya McFadden Photo
Sharon Jones McCann, Malcolm Welfare, Jorge Lopez, Theodore Brooks, James Flaherty, and James Rawlings outside the Chapel Street headquarters of Sickle Cell Disease Association of America CT.
New Haven will soon learn more about the local impact of an understudied disease: sickle cell anemia.
The information will come from a student documenting “the current status of” the disease in Connecticut. The Sickle Cell Disease Association, based on Chapel Street across from the St. Raphael branch of Yale New Haven Hospital, will carry it out with help of anew $25,000 grant.
Click here and here to read recent New York Times articles about the national scope of the challenge.
Following is the full text of a release about the grant and the study:
The Sickle Cell Disease Association of America CT has received a grant for $25,000 from the Social Venture Partners Connecticut, a non-for-profit organization that invests its resources to advance equitable solutions for closing Connecticut’s opportunity gap to address many of the systemic inequities that drives the excessive morbidities and mortality and quality of life issues within the Sickle Cell Community in CT.
The Sickle Cell Disease Association of America CT will use these funds to document “The current status of the Sickle Cell Community in CT”’. Sickle Cell Disease which has been largely unattended since it was first diagnosed over 125 years ago and still persist without a cure and the population impacted endures many medical, health and social inequities and today still has a less than expected shorten life expectancy compared to the general public in CT.
Sickle Cell Disease beyond its significant medical challenges inclusive of the many hospitalizations, this community suffers through many quality-of-life challenges that are equally devastating such as academic challenges due to frequent hospitalizations, significant social stigma and the lack of funding compared to other genetic disease.
Jim Rawlings, the President and CEO, has significantly broadened the strategic objectives of the organization and pivoted to Awareness and Prevention within the Sickle Cell and the broader community. This emphasis will be directed to minimize the number of newborns with Sickle Cell Disease as tracked by DPH Newborn Screening. This new emphasis will also launch efforts to increase the academic performance of these students through tutorials and raise additional funding since many students have noted that their Sickle Cell Disease negatively impacts their academic performance.