Jett Foundation’s Family Workshops are our national educational program that brings together clinicians, researchers, and families affected by Duchenne muscular dystrophy to learn about care, crucial information, and resources in many cities each year.
On April 6 in New Orleans, families, individuals, community members, and professionals from the Duchenne space joined to hear presentations on emerging therapies for heart failure in Duchenne and self-care/support for caregivers and siblings. We also heard from Trina Stelly, Jett resource Specialist, on female carrier issues and personal perspectives, and from Jessica Rownd on her perspective as a mother impacted by Duchenne.
Becky Prejean, Executive Director of Dreams Come True – Louisiana, presented on what their organization provides. Becky shares: “Dreams Come True was honored to be invited by Trina and Johnny, dream parents who lost their son to Duchenne, to speak at Jett Foundation’s workshop. The event allowed DCT to connect with doctors and pharmaceutical representatives who share our passion for helping children with illnesses and diseases. One of the doctors was the physician of a recent dream child, who greeted me with a warm hug and expressed gratitude for the support we provide to families. We are grateful for the chance to spread the word about DCT and to continue making dreams come true for children facing serious illnesses.”
During her Personal Perspective presentation, Duchenne mother and caregiver Jessica Rownd shared: “While I was pregnant with my son, Wyatt, I thought I had an apple, but I really had an orange. Speaking with a physician after my son’s Duchenne diagnosis, he reminded me that I still have my sweet son, and he’s not exactly the same. But just like there are differences between an apple and an orange, there are so many things that are the same. Wyatt is not just Duchenne, he is my little boy.”
A recording of presentations and speakers from the New Orleans Family Workshop can be found on our YouTube channel.
The workshop concluded with a pharmaceutical company meet & greet where families can learn more about available clinical trials and more resources as they relate to the pharmaceutical industry.
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 [email protected].
Thank you to our 2024 Family Workshop sponsors:
