CHICAGO – When you have a rare muscle disorder, it’s easy to feel isolated by your condition – because you don’t know anyone else who has it. Montville resident Sarah Foye has made it her life’s work to reach out and advocate for her son, helping to organize a recent conference in Chicago for those suffering with rare muscle disorders. The conference enabled patients to meet each other, plus researchers and clinicians.
The SciFam Congenital Muscle Disease Scientific & Family Conference, held at the end of July, was a four-day conference designed for three sub-types of muscle disease patients, Foye said; they often have much in common with each other.
“The conference was for families of people who have congenital muscular dystrophy, nemaline myopathy, and titinopathy,” she told TAPinto Montville. “This is a small group of people because these illnesses are so rare. The researchers, however, are shared among these three sub-groups of muscle problems. The organization committee that I was a part of decided to combine the conferences into one to save money – and we can all learn from each other. People who suffer with these diseases have common symptoms, such as breathing problems and weakness in their muscles.”
Foye’s son Adam has had problems with muscle weakness since early childhood, but it wasn’t until he was 12 that the family and researchers were able to locate the problematic gene and diagnose Adam with titinopathy.
The conference, which had more than 500 in attendance, was split into parts, Foye said. Researchers convened to share their findings at a symposium which was the first part. The second part was families meeting the clinicians who treat these illnesses and the researchers working on the illnesses. Foye said there was much sharing of information.
“The researchers shared their information with the families, but it also went in the other direction,” she said. “A lab researcher said he had never met a person affected with titin – he said, ‘Now I have a better understanding.’”
The final portion of the conference was family-focused, Foye said. It dealt with the day-in and day-out issues of dealing with the disorders, plus the siblings of affected children and how they can be affected by the situation as well.
“There were sessions on adaptive vehicles like wheelchair vans, and a workshop for caregivers because it’s easy to get lost in the shuffle,” Foye said. Adam and Foye’s husband Patrick presented on “Life Hacks,” such as being efficient, saving time and energy, and preparing for emergencies. Clinicians attended these sessions as well, she said.
Foye said the conference took about 12 months to plan, and she was a member of a team of about seven people.
From the comments that attendees gave, it was appreciated.
“I was humbled to see so many children and others in power chairs living their best lives and powering through their limitations,” one attendee wrote to Foye. “It was amazing. With good planning and support, I no longer have to imagine my life imprisoned at home.”
“It was a privilege to attend the SciFam conference and meet other affected families,” another wrote. “Having struggled to receive a diagnosis for many years, it was a refreshing experience to meet so many other families who had similar experiences. Meeting the experts in the research and treatment of our spectrum of conditions was eye opening in ways I’m not sure I can put simply.”
Adam was enthusiastic about the conference as well.
“The best part of the conference was meeting other people working towards the same goals and facing the same challenges,” he said.
Sarah Foye gets very emotional about attending the conference and walking into the meeting space in Chicago.
“When I walked in and saw all these people with wheelchairs and walkers, kids and adults, sharing, saw them talking to each other, talking about how they had the same sub-type [of muscle disorders], zooming around in power wheelchairs – it was really moving to be in that room,” she recalled. “The family conference served as a catalyst for connections to drive the energy forward – family to clinician, researcher to researcher, and family to researcher. It was really magnificent. It was a life-changing experience and I was honored to be a part of it.”
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