Jett Foundation visited the University of Missouri Health Clinic in Columbia, MO, on November 11, 2023, for our final Family Workshop of the year. In attendance were eight (8) families impacted by Duchenne muscular dystrophy as well as many clinicians, pharmaceutical representatives, and employees to learn from speakers on various Duchenne topics.
Family Workshops are Jett Foundation’s national education program that brings together clinicians, researchers, and families affected by Duchenne to learn about care, crucial information, and resources in many cities each year. Columbia’s workshop concluded a series of four (4) in-person workshops hosted by Jett in 2023.
Dr. Zarah Ner, an Associate Professor of Pediatrics at the University of Missouri, joined us to speak on non-invasive ventilation for individuals with Duchenne muscular dystrophy. Dr. Ner shared suggestions on CPAP and BiPAP machine usage, face mask options, ventilation’s connection to muscle degeneration, and more.
Dr. Jane Emerson, Division Director of Pediatric Rehabilitation at the University of Missouri, presented on the topic of dealing with school-related advocacy, including issues, resources, Individual Education Plans, and more. “There are great variations within Duchenne of what a five-year-old versus what a 21-year-old needs in school,” says Dr. Emerson. “But I empower those of you out of school to be an advocate for others.”
Also speaking in Columbia was Dr. Dongsheng Duan on Duchenne gene therapy updates and Thomas Carter on his Individual Perspective living with Duchenne. A recording of Columbia’s presentations can be found on Jett’s YouTube channel here.
The workshop concluded with a pharmaceutical company meet & greet for families to learn about available clinical trials and more resources as they relate to the pharmaceutical industry.
Jett’s Director of Programs Alexa Tinsley says, “This year’s Family Workshops made a positive impact on many individuals and families in the Duchenne community and we thank everyone who attended in 2023 to learn more. It is important to Jett Foundation to provide families with tools necessary to be their own best advocates in the Duchenne community and we can’t wait to connect with many more families at workshops in 2024.”
Jett Foundation will visit New Orleans, Charlotte, Maine, and Iowa City to host Family Workshops in 2024. More details and registration will be available soon on our website.
Thank you to everyone who connected with us in 2023; we look forward to seeing you at a Jett event in 2024!
You can help us to support families in the Duchenne community! Donate today or learn more about becoming a sponsor of our direct service programs by emailing maura@jettfoundation.org.
Thank you to our 2023 Family Workshop sponsors:
