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Families affected by Prader-Willi syndrome will gather this Saturday at Zoo Miami for a special community event designed to provide support and connection in a safe, understanding environment.
The Prader-Willi Syndrome Association of the United States Florida chapter is hosting Family Day at Zoo Miami from 10 a.m. to 5 p.m. The event aims to help families reconnect and engage after years of isolation during the pandemic.
"Ever since COVID, our state-by-state chapters have really tried to regroup and help their families re-engage," said Dorothea Lantz, director of community engagement for the national organization and mother of 8-year-old Hunter, who lives with the condition.
Prader-Willi syndrome is one of more than 10,000 rare diseases. Its hallmark symptom is hyperphagia, which is the inability to ever feel full.
"You can imagine not eating for three days, and that feeling of starvation and lethargy and sleepiness and agitation," Lantz said. "People with Prader-Willi syndrome live like that every single day, 24 hours a day, 365 days of the year."
The condition also comes with behavioral challenges, severe anxiety, and excessive daytime sleepiness.
The zoo event will provide families with a PWS-friendly lunch and opportunities to connect with clinicians from the new PWS interdisciplinary clinic at Nicklaus Children's Hospital. Industry partners will also discuss ongoing research and development.
"It's hard for people to understand just how isolating any rare disease can be, but in particular, PWS, because of the food component, and everything revolves around food," Lantz said.
To sign up for the event, visit givebutter.com/family-zoo-day-miami. For more information about advocacy and support, families can visit pwsflorida.org.
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