We know that many of your struggles in life are specific to the Duchenne experience. It can be so hard. We want to help.
We have volunteers from around the world who are willing to listen, to talk, and to brainstorm to help you with the challenges Duchenne presents. Every single one of our volunteers is from our community and has extensive experience with life with Duchenne. Many are also certified life coaches.
Our volunteers have had a broad range of Duchenne experiences, ranging from isolation, education, advocacy, financial independence, marriage and even outliving parents. Whether you are an individual with Duchenne, a caregiver, carrier, sibling or griever, we have people who want to help.
Australia
- Joeanne Smith has lived through just about everything Duchenne can throw at a person. Her son Zak, passed away at 16 years old from Duchenne. She is also a manifesting carrier of Duchenne who uses her powerchair full time. Though life has been wrought with challenges and unfairness, Joeanne still gives back to our community tirelessly.
New Zealand
- Oliver Groom is 31 years old with Duchenne Muscular Dystrophy. He lives independently in New Zealand, loves music and his cats, too. He has personal experience with employing and managing carers, living independently, traveling with a disability, dealing with hospital appointments and life with DMD.
United States
- DJ Kimble is 43 years old with Duchenne Muscular Dystrophy. He lives with his parents in the eastern United States. He loves music, motocross, having a fun time and helping our community. He has personal experience with the isolation of Duchenne, Eye Gaze technology, and creating a world full of positivity.
- Jacob Gapko is 45 years old with Duchenne Muscular Dystrophy. He lives in the northern United States with his parents. He uses a power wheelchair and non-invasive ventilation 24/7. He has a BS, an MLIS, and is a specialist. In his free time Jacob enjoys spending time with his girlfriend of 2 years and helping our DMD community.
- John Buchbach is 45 years old Duchenne Muscular Dystrophy. Despite DMD, he has kept busy over the years with attending business school, working (and paying for his own accessible vehicle) and even owning his own business. John still stays busy, but in quite a different way. Actually, both John and his wife stay busy – raising their young son together.
- Ryan Russell, PhD – Living with Duchenne has taught Dr. Russell always to have hope and purpose. By following these two guiding lights, Dr. Russell has earned his PhD in Psychology and is also a Life Coach, public speaker, author and workshop developer. Ryan is 41 years old, has survived both his parents and lives independently. His hobbies include collecting Star Wars memorabilia and writing novels.
Contact Us
All Duchenne Discussions are generously donated by our volunteers and are free of charge to our community.
We have volunteers in several countries around the world. While you are not bound to work with one in your same country, it may make the timing of the appointments easier. Contact us below to get started.
