Community Webinar: Fat Embolism Syndrome

When:

November 7, 2024 1:00PM

Join Jett Foundation’s Community Webinar Series to hear from Dr. Han Phan, Yulanda Kirby-Kiser, and Perlita Hains on fat embolism syndrome, a condition that occurs when fat enters the bloodstream and blocks blood flow to the brain, lungs, skin, and other areas

Fat Embolism Syndrome
Thursday, November 7, 2024
1pm ET | 12pm CT | 11am MT | 10am PT

Guest Speaker

Perlita’s youngest son, Levi, lives with Duchenne muscular dystrophy. Her family enjoys the annual Jett Ride and National Challenge, where Levi’s two older brothers and community ride for him and bring awareness toward Duchenne muscular dystrophy. Perlita is a very active advocate and voice in the Duchenne community. Perlita helped create Porch Nite, a Jett Foundation Support Group, and always extends a helping hand to any family in need. “I feel that my knowledge of Duchenne and skills in public speaking are an asset as an ambassador,” she says. “I am honored to help and will speak whenever I can about how supportive our community is.”

Guest Speaker

Yulaunda is an RN of 26 years and a mother of 5. Her youngest son, William (15), lives with Duchenne Muscular Dystrophy. William also has cognitive impairments, making the diagnosis that much more difficult to navigate. Yulaunda is passionate about quality of life for her family. The Kiser family is very active with A Kid Again organization, where the family are currently ambassadors. Yulaunda has been an ambassador for Jett foundation in previous years and fundraised for her family’s van conversion to include a lift. William recently had a fall with a fractured femur that has brought attention to the need for further education to the medical staff regarding fatty embolism in the Duchenne community. Speaking out about Williams journey, she hopes to help other children and families become confident in advocacy about Duchenne.

Guest Speaker

Dr. Han Phan is a pediatric neurologist and sleep specialist who is highly passionate about clinical trials in neuromuscular diseases, specifically Duchenne muscular dystrophy and Spinal muscular atrophy. She is a member of the Pediatric Advisory Board at the FDA and a guest researcher at the CDC Newborn Screening Branch. She served as an Associate Professor at the University of Alabama, and co director of MDA clinic. At the Rare Disease Research center, she is the principal investigator overseeing ongoing studies in neuromuscular patients.

Our Community Webinar Series is focused on ensuring that our Duchenne and rare disease community is better prepared for those unexpected moments, challenging medical decisions, and difficult stages when on a Duchenne journey.

No one ever expects Duchenne and there is no correct way to tackle a diagnosis, but we can always better prepare. This webinar series is an opportunity to equip yourself with more knowledge, resources, and tools for those real-life, often unanticipated, scenarios.