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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.
FUNDED PARTNER SPOTLIGHT: SICKLE CELL DISEASE ASSOCIATION – ST. PETE CHAPTER
A Path Forward: Sickle Cell Equity, Treatment, and Training in Florida: Ideas for Collaboration Generated at the St. Petersburg Sickle Cell Forum
Enhancing Medical Response for Sickle Cell Clients:
Q: What are some suggestions for creating more respectful, effective, and professional responses by medical personnel when sickle cell clients present at hospitals and emergency
rooms?
A: Improving the response of medical personnel to sickle cell clients involves several key
strategies. Clients should carry a list of their medications and wear a medical alert bracelet (for
sickle cell). Registering with hospitals and medical facilities can streamline the care process,
while establishing database registries for sickle cell clients and holding emergency rooms
accountable for not implementing guidelines are crucial steps.
Advocacy for Sickle Cell on Legislative Agendas: Q: How do we ensure that sickle cell advocacy to change laws and public policy is included on local and state legislative agendas?
A: To ensure sickle cell advocacy is included on local and state legislative agendas, several
strategies can be employed. This includes things like annual meetings with legislators and
support for current legislation, such as Senate Bill 7070/HB 7085, and maintaining relationships
with state representatives and consistent campaigning to keep sickle cell issues on the agenda.
Organizing "Write Congress" events and reinstating Sickle Cell Advocacy Day at the Capitol can
mobilize support.
Utilizing Social Media for Sickle Cell Education:
Q: In what ways can we use social media to make sickle cell education relevant for today’s young people?
A: Social media can be a powerful tool for making sickle cell education relevant for today’s
young people. Short videos on platforms like TikTok, Instagram, and YouTube can engage a
younger audience. Commercials and public service announcements (PSAs) on popular platforms
(like Fortnite, Netflix, and YouTube) as well as developing a website that communicates,
advocates, and educates people about sickle cell is important and could also increase awareness.
Billboard located on I-275 at exit 22 near 8th and 9th St. S. The billboard will be on display from September 2 to September 29, 2024.