WORCESTER – Donning the color of the teams they came to represent, about 500 people gathered at Green Hill Park for the first Walk Strong to Cure Juvenile Myositis event on Sunday.
With about 12 teams registered to participate in the walk for a cure, the event had a goal to raise at least $50,000, and a stretch goal to raise $75,000 to go toward research and treatment for children with Juvenile Myositis (JM). This was the first annual walk, that marked the start of the Cure JM Foundation Massachusetts chapter that also represents New Hampshire, Vermont, Maine and Rhode Island. The walk on Sunday raised more than $45,000.
According to Melissa Corey, chairperson for the event, and mother of Gino Corey, a nine-year-old boy who was diagnosed with JM, the disease is a very rare autoimmune disease that has no cure. Every year only about two out of 1 million children are affected in the United States.
“Because JM is a silent disease, something that people cannot physically see all of the time, we don’t always know what is going on inside of children like Gino,” Mrs. Corey said. “Having a child with a diagnosis of a rare disease like JM, or being that child can feel really lonely sometimes, but I can tell you that we don’t feel lonely today.”
There are two different forms of JM: Juvenile Dermatomyositis (JDM) which affects both the skin and muscles, and Juvenile Polymyositis (JPM), which affects the muscles but not the skin.
“It feels really nice to have people come out and support us,” Gino Corey, of Millbury said. He was diagnosed with JM in February of 2017.
Mrs. Corey also said, JM can be a life-threatening disease, as it also affects the internal organs, causes calcinosis, vasculitic ulcers, heart damage, and more. Most children and teens battling JDM are on several different medications to keep the disease under control, and most of these children have treatments sometimes longer than cancer patients.
“I am here because my son (Mikey Galvin 2002-2005) passed passed away from the disease. It means a lot for family and friends to support us, and Cure for JM does a lot to keep the memory of our son alive,” Annmarie Galvin, of Dedham said.
“I know a lot of people here, it makes me feel like I’m not really alone,” Harry Borodemos, 8, of Fall River said. He was diagnosed with JM in April of 2016.
Because it is such a rare disease, some children are diagnosed with the disease years after noticing symptoms. In Harry Borodemos’ case, it took three years to come to a diagnosis.
“It feels like a great thing that people are caring and interested enough to learn about this rare disease,” Sophia Borodemos, mother of Harry Borodemos said.
“It’s definitely hard living with this disease, but you can overcome it and get through it,” Jenna Krikorian, 16, of Worcester said as advice to other children with the disease. She was diagnosed with JM in April of 2013.
“My daughter being the oldest one of the children here diagnosed with JM gives the other children hope because she is doing so well,” said Donna Krikorian, mother of Jenna Krikorian.
“JDM is a very rare disease, we don’t understand why this happens to some people, and we are trying to work hard to find an answer,” Dr. Fatima Dedeoglu, Pediatric Rheumatologist at Boston Children’s Hospital said.
“We need a cure,” Mrs. Corey said.
To support the cause by making a donation, you can visit https://www.crowdrise.com/walkstrongmassachusetts.