On October 7, 2023, Jett Foundation hosted a Family Workshop at the Billings Clinic Health Conference Center in Billings, MT. In attendance were families impacted by Duchenne muscular dystrophy, pharmaceutical representatives, and clinicians to connect, learn more about Duchenne and Jett resources, and hear educational presentations.
Dr. Elizabeth Wood of the Billings Clinic spoke on Clinical Trials and a breakdown of trials as they relate to a Duchenne diagnosis. “Within standards of care and therapy, we have come a long way since pre-1970,” says Dr. Wood. “Age of survival of individuals with Duchenne and Becker muscular dystrophy is extending into the 40’s and 50s, which is wonderful. Between 1970 and 1990, we have been able to shift the curve pretty dramatically, such as the advent of corticosteroids to reduce inflammation.”
Bobbie Thurston, a Social Worker at the Billings Clinic, provided families with many options for resources in their area such as financial assistance, insurance aid, state offices, school support, and much more.
Closing the day of presentations was Dr. Patricia Notario of the Billings Clinic who spoke on mental wellness in medically complex individuals. She shared, “With regard to psychosocial issues, Parent Project Muscular Dystrophy gives us five facts to remember: 1. People with Duchenne may have a higher chance of psychosocial issues. 2. Healthcare is not complete without psychosocial care. 3. Mental, behavioral, and emotional health should be screened at every visit. 4. The best way to manage psychosocial problems is to identify them early and start treatments. 5. There are many different therapies and medications that may help.”
The Billings Family Workshop also included a Patient/Parent perspective video presentation and a pharmaceutical company meet-and-greet for families to learn more about clinical trials, which are critical studies in the fight to cure Duchenne muscular dystrophy.
Jett Foundation’s Community Program Coordinator, Julie LeClair, says, “Family Workshops continue to be valuable for our families and the entire Duchenne community. Being able to reach families on a personal level is mutually beneficial for those impacted by Duchenne and for Jett Foundation. We look forward to sharing more speakers and resources in many areas of the country as we continue hosting Family Workshops.”
A recording of Billings’ Family Workshop is available on YouTube by clicking here.
The Jett team will host one final workshop in 2023 in Columbia, MO, and plans to visit more locations in 2024.
Thank you to our 2023 Family Workshop sponsors: