On Saturday, April 30, 2022, Jett Foundation hosted its first in-person workshop since 2020 in Irvine, California for families impacted by Duchenne muscular dystrophy. At the workshop were many families impacted by Duchenne, Jett Community Ambassadors, Jett Foundation employees, speakers from the medical field, and seven pharmaceutical companies to discuss and answer questions pertaining to clinical trials.
Jett Foundation’s family workshops are a 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.
Jett Foundation’s Director of Community Engagement, Alexa Tinsley, says “At these workshops we aim to empower individuals and families with the knowledge needed to be their own best advocates, educate patients on topics of interest within the community, and help spread awareness about Duchenne. We do this by partnering with experts in each community who are knowledgeable about care for individuals with a Duchenne diagnosis.”
Erik Henricson, PhD, who works as an Associate Director for Clinical Research at the UC Davis Department of Physical Medicine and Rehabilitation, presented on “Understanding More About Behavior and Duchenne” and “Preparing for Clinical Trials in Duchenne.”
Also speaking at the event was Sara Aluffi, the mother of Joaquin Aluffi (8) who lives with Duchenne. Sara provided insight on living with Duchenne muscular dystrophy and participating in a clinical trial from a parent’s perspective. The Aluffi family launched their nonprofit, Joaquin’s Warriors, in 2018 after facing the challenges of Duchenne muscular dystrophy for years. Their nonprofit aims to raise money for Duchenne research, and they recently partnered with Jett Foundation’s Jett Giving Fund program.
Concluding the workshop was a meet and greet for families and pharmaceutical companies. These companies are able to provide information and advice for families who wish to explore clinical trials, which are critical studies in the fight to cure Duchenne muscular dystrophy.
A recording of the Irvine, California Family Workshop can be viewed on the Jett Foundation YouTube channel. Jett Foundation plans to host two more family workshops in 2022: Denver, CO (October) and Dallas, TX (November). Once dates and details are finalized, they will be available here.
“We hope to be able to meet individuals and families where they are at and provide them with education and knowledge to help them make their own decisions about care. We also aim to bring families together to share experiences, knowledge, and offer each other support through these programs,” says Alexa.
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 firstname.lastname@example.org.