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The People Who Care About You
CureDuchenne is made up of people from all walks of life who share a common purpose — to find a cure for Duchenne and support all the families and patients affected by it.
Our CureDuchenne Cares team supports you on your journey with Duchenne, whether that’s lending an ear to listen, helping you understand the complex biology behind the disease, or navigating an individualized education program (IEP) plan at school.
Below you will find a brief bio about our Cares team, including more about their memorable experiences interacting with the Duchenne community.
Meet the CureDuchenne Cares Team
Kerry Johnson
Senior Director of Community Engagement
Kerry is the leader of CureDuchenne Cares and has developed relationships with many of those affected by Duchenne through conferences like FUTURES and one-on-one interactions with families.
A memory that sticks out from the 2022 FUTURES welcome reception is when all the kids, little and big, got into wheelchair races against one another around the outskirts of the patio.
“For some of the kids, it looked like a ‘lightbulb moment’. They were surrounded by other kids who might look like them or also be in wheelchairs, as well as the siblings who know exactly how to play with and include them. It made me realize that there might never have been a recess or field day as inclusive as this in their experience. It was so fun to watch.”
Kerry Johnson
Senior Director of Community Engagement
Chelsea Gillen
Director of Event Operations
If you have gone to a CureDuchenne Cares event, chances are Chelsea was the one behind the scenes who made it happen. Her focus is on Cares workshops, sessions, and larger events, like the upcoming FUTURES family conference.
Chelsea said her most memorable moment was when she first started over 3 years ago. CureDuchenne was hosting a Cares session in Northern California for families. One of them had been newly diagnosed.
“Seeing the community come together with industry, CureDuchenne staff, and family members was so impactful. The conversation was smooth and raw with emotions but seeing that CureDuchenne provided a safe place for families was inspiring for me.”
Chelsea Gillen
Director of Event Operations
Karadee Chamley
Community Events Coordinator
Karadee also works to ensure all sessions, workshops, professional courses, and FUTURES conferences go on without a hitch. She also works behind the scenes on virtual events such as our Cocktail Talks and Webinars.
A few years ago, she was working with kids with neuromuscular diseases. One boy with Duchenne and his friend with another form of muscular dystrophy sneakily got approval from her to sing a non-kid friendly AC/DC song, Thunderstruck.
“By the time I realized what had happened it was too late. They knew exactly what they had done and giggled when they saw my face. I love this memory because it was so special in so many ways. Seeing the tight friendship these boys had created in just a few days, while showing their true personality with their talent show performance, reminded me to live a little and enjoy life. It’s okay when things don’t go perfectly according to plan. Sometimes it can make life a bit more entertaining.”
Karadee Chamley
Community Events Coordinator
Jennifer Wallace
Physical Therapist
Jennifer has been working with the Millers since Hawken was diagnosed and is a trusted physical therapist for many boys with Duchenne. At CureDuchenne Cares, she helps train physical therapists and families on how to give the best care to their patients or child.
“I have thoroughly enjoyed working with all the boys, young men, and a couple of girls and most days, I have fun with them even though we are working through a very difficult diagnosis. They have taught me so much about joy, patience, blessings, and acceptance. I wouldn’t change a thing!”
Jennifer Wallace
Physical Therapist
Doug Levine
Physical Therapist
Doug is Jennifer’s counterpart. He teaches courses on physical therapy across the country and, more recently, the world. When not jet-setting to teach other physical therapists, Doug is a pediatric PT and school-based therapist in Austin.
The first time Doug volunteered for an MDA Summer Camp he was a bit apprehensive, but it turned out to be an impactful experience.
“This had such a profound effect on me and it was from there that I decided that this was a community that I wanted to be a part of. To teach and help and learn from. To be a friend and support of. To learn to appreciate and smile and be more present from.”
Doug Levine
Physical Therapist
Sheryl Marrazzo
Community Engagement Coordinator
Sheryl is Jake’s mother first and foremost. But as a mom to a young man living with Duchenne, she is also here to answer any questions or listen when you are having a tough day.
Seeing her son on stage are some of the best memories she has of her son, who has taught her to live the life and not the diagnosis. Sitting in the audience watching Mamma Mia during the closing song is etched in her memory
“In the last show of four, Jake inadvertently shut off his chair, but quickly turned it back on and hit his spot on the stage. He laughed, and really the audience would never have known, but we did. Seeing him get through things like that with a smile on his face tells me that he can get through most anything…and get through it happy!”
Sheryl Marrazzo
Community Engagement Coordinator
Leslie Porter
Community Engagement Coordinator
Leslie is also a mom to Grant, who has Duchenne, and his younger sister Renna. She also spends her time meeting with families and hosting virtual events with the community.
Every opportunity that she is afforded to meet someone living with Duchenne seems to chip away at her hopelessness and exemplify the rich possibilities. In Las Vegas, she met Joel, a kind 16-year-old with a shy smile.
“We introduced ourselves with our rose – something good in our life, our thorn – something hard, and our bud – something that gives us hope for the future. Joel’s rose was the love he has for his amazing mom, who does all she can. His thorn is the fear he has that his 1-year-old nephew could potentially have Duchenne, and his bud is that he will live to see a cure for this disease. I was blown away by his compassion, his gratitude for life and his beautiful spirit.”
Leslie Porter
Community Engagement Coordinator
We Are Here For You
Now that you’ve met the team, please don’t hesitate to get in touch. The CureDuchenne Cares team is here to support you on your journey with Duchenne in any way they can. We encourage people to reach out for a 1:1, and join us at a virtual event, workshop, or session. And, don’t forget that you can meet everybody in person at FUTURES!
