Funded Partner Spotlight: Sickle Cell Disease Association – St. Pete Chapter
When Mary Murph’s daughters were diagnosed with Sickle Cell Disease more than 50 years ago, information on the condition was hard to find. In her quest to better understand what her daughters were facing and how she could help, Murph wrote dozens of letters to groups all over the country before finally receiving a handful of brochures back from a group in New York.
“I was frustrated because although I was an educator, not in a nursing field, every doctor I asked didn’t know anything about it, either,” Murph explained, adding that she reached out to medical professionals, legislators, and research organizations throughout the country. “Once I got those brochures, I began to educate myself on Sickle Cell, and then I began to talk to other people about it. Through that search and reading the literature, I discovered that I needed to do something.”
In 1972, called by a passion to advocate for and educate her local community, she founded the St. Petersburg Chapter of the Sickle Cell Disease Association of America. The group’s first office was in Murph’s home. She’d get calls in the middle of the night from patients in need of medical care who needed someone to advocate for them and explain the condition.
Today, the group’s offices are housed in the Evara Health at Johnny Ruth Clark Center on 22nd Street S. They have one full-time employee, and a board of dedicated volunteers who commit their time and energy to helping the group achieve its mission.
The group offers a wide range of services including family support groups, scholarships, educational presentations, genetic counseling, emergency financial assistance, and more. Mrs. Murph, who serves as President and CEO, oversees these operations in a volunteer role that spans from high-level management to direct community engagement.
Advocacy and education remain core components of the group’s work, as they work to correct misconceptions throughout the community and raise awareness of best practices in treatment and care for those living with the condition.
September is Sickle Cell Awareness Month. Click here to see a fact sheet on the condition. Click here to watch a short educational video.
The group will hold a fundraiser September 21, 2024, at the University of South Florida, St. Petersburg Campus. Visit their website to learn more. If you travel I-275 North in September, you may also see the group’s digital billboard, pictured below.