On Saturday, October 1, Jett Foundation hosted its second Family Workshop of 2022 in Denver, Colorado. The workshop welcomed families impacted by Duchenne, Jett Foundation employees, speakers from the medical field, and nine pharmaceutical companies.
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.
Jett Foundation’s Community Program Coordinator Julie LeClair, says, “When planning our Family Workshops, we like to prioritize special topics spoken by experts in their field to ensure that we are including knowledge and resources that are needed for our Duchenne community.”
In Denver we heard from many great speakers, including three professionals from Children’s Hospital Colorado. Dr. Christine Petranovich and Dr. Andrea Miele spoke on the topic of Learning and School-Related Challenges: Tips for Maximizing Success and Limiting Frustration. Dr. Tess Simpson presented on Psychological and Social Adjustment in Youth With Muscular Dystrophy.
“The goal of my presentation was to offer practical tips for challenges that parents and families commonly experience,” says Dr. Petranovich. “I hope that parents and caregivers will feel empowered to take care of themselves and their own needs. In order to continue to be a strong caregiver for your child, you have to take care of yourself.”
The day also included a Parent Perspective presentation from Erica Hill, a Duchenne carrier and mother of an individual who lives with Duchenne. “Speaking at the workshop meant that everyone will learn what day-to-day life is like for a family with a child that has Duchenne/Becker muscular dystrophy,” says Erica.
An element to Jett Foundation’s Family Workshops that everyone experiences is learning. Dr. Patranovich shares that “The highlight for me was the opportunity to learn more about the wide range of services that are offered by Jett Foundation.” Erica Hill agrees. She says, “I really enjoyed connecting with the professionals and learning about some techniques I can work with for my family.”
The workshop concluded with 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.
“What was unique about our Denver workshop was the close knit community it created,” says Julie. “Each person in the room seemed to make a special connection or learned something new about each other. Our workshop reached a level of comfortability that we hope to see at every Jett Foundation event.”
A recording of the Denver, Colorado Family Workshop can be viewed on the Jett Foundation YouTube Channel. Jett Foundation plans to host one more workshop in 2022 in Dallas, Texas on November 12. Details and registration can be found here.
You can also 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 email@example.com.
Thank you to our 2022 Family Workshop Sponsors: