Consuela A. Albright: The Power of Community Advocacy in Sickle Cell Disease
Consuela A. Albright, Nurse Practitioner at Cleveland Clinic, shared a post on LinkedIn:
“Some advocacy history is right in my own backyard.
The American Sickle Cell Anemia Association (ASCAA), based here in Cleveland, is the world’s oldest sickle cell and hemoglobinopathy service organization – founded in 1971.
Over more than 50 years, ASCAA has served more than 400,000 families, offering counseling and follow-up for infants who screen positive on newborn screening, family support services, teacher education so kids with SCD get the right accommodations at school, and community screening at dozens of health fairs each year.
ASCAA also does something I think is underappreciated: it reaches beyond the communities most people associate with sickle cell disease, conducting outreach to Cleveland’s African American, Hispanic, Arab, Asian, and Mediterranean populations – a reminder that sickle cell trait and disease affect more communities than the general narrative suggests.
Organizations like this are the infrastructure that makes advocacy sustainable.
Long before a bill reaches Congress, someone at ASCAA is sitting with a scared parent, explaining a newborn screening result.
If you’re in Cleveland and want to get involved, ASCAA is a great place to start.”
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