Jett Foundation’s third and final Family Workshop of 2022 took place in Dallas, TX on Saturday, November 12, 2022. Joining the Jett Foundation team in Dallas were families impacted by Duchenne, speakers from the medical field, and 11 pharmaceutical companies.
Family Workshops are Jett Foundation’s national education program that brings together clinicians, researchers, and families impacted by Duchenne to learn about care, crucial information, and resources in many cities each year. In 2022, we hosted workshops in Irvine, CA, Denver, CO, and Dallas, TX.
“Hearing from medical experts and families in our community serves great value to those who attend our workshops and tune into Jett Foundation’s events,” says Jett Foundation’s Executive Director Eric Snyder. “Like many of our other events and Family Workshops from this year, Dallas provided vital information and connections to our Duchenne community, and we can’t wait to expand our reach even further in 2023.”
Delivering a presentation on Mental Health and Psychosocial Care in Duchenne was Dr. Kaitlin Batley, an assistant professor of pediatrics and neurology at UT Southwestern/Children’s Health Dallas. “This is a topic that is really important to me and one that we don’t focus on quite enough,” she says. “I was honored to speak at Jett Foundation’s Family Workshop and spend time with these amazing and courageous families! I hope that this talk inspired families to discuss mental health with their medical team regularly as well as communicate with schools about the utility of psychometric testing and individualized education plans. In doing so, we are able to focus on the care of each person as a whole.”
A staple to this year’s Family Workshops was Parent and Individual Perspective presentations from family members in our community. Paula & Dan Florczykowski, founders of Finn’s Friends that supports families, like theirs, who are impacted by Duchenne, shared their story and perspective in Dallas. Paula says, “As we walk through this very difficult diagnosis, it is always incredible to be among ‘our people’: people who get it, people who understand it, and people who work so hard to change the trajectory of this illness. Jett Foundation’s well-organized and informative workshop was a blessing for my husband and I. We walked away feeling supported and truly heard.”
Also sharing her personal perspective was Amanda McConathy, a carrier of Duchenne as well as a mother and sibling to individuals with Duchenne. “I have two brothers with DMD, and both passed away in 2016,” says Amanda. “But being a parent is still very new. Luckily, there is now a huge support system which is different from when my parents were raising my brothers. Thank you to Jett Foundation for allowing me to share my perspective with everyone.”
The workshop also included a meet and greet with pharmaceutical companies who 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 Dallas Family Workshop can be viewed on the Jett Foundation YouTube Channel.
Jett Foundation plans to host more Family Workshops in 2023:
- Gainesville, FL (April 15)
- Minneapolis, MN (May 20)
- Billings, MT (October)
- Kansas City, MO (November)
Thank you to our 2022 Family Workshop Sponsors: