On track to derail Duchenne
JOA Picnic in the Park chugging along 10 years strong
John Owen Dumm’s Cleveland Clinic nurse, Marge Zabukovec, (right) gives Jen Dumm a big hug. She called it a privilege to work with this family. Photo by JAIME ANTON
NORTH ROYALTON – Ten years ago, the Dumm family hosted its first Picnic in the Park to raise awareness and funds to begin battling Duchenne Muscular Dystrophy, the disease their son John Owen, then 4, had been diagnosed with.
John Owen’s Adventure Inc., JOA, was born. A non-profit organization many will recognize as a train with the battle cry, “Derail Duchenne.”
At this first picnic, they expected 300 people but were caught by surprise when more than 1,000 guests arrived and raised a total of $15,000 that was put directly into the hands of Duchenne researchers.
Over the years, the event has grown to upwards of $50,000 in donations and a guest list of more than 2,000 annually at German Central in Parma.
The 10th anniversary was July 8 and the dollars raised by the community means nearly $500,000 has been put toward research, research that is producing results. CRSIPRcas9 is a gene therapy currently being developed.
“The treatment can stop the progression of Duchenne, so babies born with this will never have to see a wheelchair,” John Owen’s mother, Jen, explained.
CRSIPRcas9 is expected to be available in about three years’ time.
“In 2020, we will have the biggest party you can imagine,” Jen said.
At the dunk tank, Ward 4 Councilman Paul Marnecheck never stood a chance and never had a dry moment.
“I sacrifice two hours every year, this family has to sacrifice every minute of every day, every year and they do it without complainant and with their faith intact,” he said.
Next door at the hole-in-one contest, Jaden Hudach, 13, of North Royalton, had everyone wondering if he’d sink the perfect shot once again. Two years ago, he aced the contest.
“Look at that swing,” someone said.
Jaden is a classmate of John Owen’s at St. Albert the Great School. His mother, Becky, said the Dumm family is an inspiration to all when it comes to facing life’s challenges.
“Their positivity, nothing can bring them down,” she said about what she loves about them. “They find good in everything.”
Ward 3 Councilman Dan Langshaw and Council President Larry Antoskiewicz also came out to support one of their own. Father Edward Estok from St. Albert the Great was there too. John Owen’s Cleveland Clinic nurse Marge Zabukovec also said she wouldn’t miss it.
“We love the Dumms. How awesome a family can this be? We do nothing compared to the family. They are the heroes who do all the hard work,” she said. “They make lemonade out of lemons. It’s actually a privilege to work with them.”
Jen said she can never thank the community enough.
“We have felt the empowering embrace of this community from day one to today. Each and every event we have hosted has been filled with joyful attendance from our family, friends and North Royalton community,” she said.
For more information about Duchenne, visit joainc.org.
John Owen’s Adventure Inc., JOA, was born. A non-profit organization many will recognize as a train with the battle cry, “Derail Duchenne.”
At this first picnic, they expected 300 people but were caught by surprise when more than 1,000 guests arrived and raised a total of $15,000 that was put directly into the hands of Duchenne researchers.
Over the years, the event has grown to upwards of $50,000 in donations and a guest list of more than 2,000 annually at German Central in Parma.
The 10th anniversary was July 8 and the dollars raised by the community means nearly $500,000 has been put toward research, research that is producing results. CRSIPRcas9 is a gene therapy currently being developed.
“The treatment can stop the progression of Duchenne, so babies born with this will never have to see a wheelchair,” John Owen’s mother, Jen, explained.
CRSIPRcas9 is expected to be available in about three years’ time.
“In 2020, we will have the biggest party you can imagine,” Jen said.
At the dunk tank, Ward 4 Councilman Paul Marnecheck never stood a chance and never had a dry moment.
“I sacrifice two hours every year, this family has to sacrifice every minute of every day, every year and they do it without complainant and with their faith intact,” he said.
Next door at the hole-in-one contest, Jaden Hudach, 13, of North Royalton, had everyone wondering if he’d sink the perfect shot once again. Two years ago, he aced the contest.
“Look at that swing,” someone said.
Jaden is a classmate of John Owen’s at St. Albert the Great School. His mother, Becky, said the Dumm family is an inspiration to all when it comes to facing life’s challenges.
“Their positivity, nothing can bring them down,” she said about what she loves about them. “They find good in everything.”
Ward 3 Councilman Dan Langshaw and Council President Larry Antoskiewicz also came out to support one of their own. Father Edward Estok from St. Albert the Great was there too. John Owen’s Cleveland Clinic nurse Marge Zabukovec also said she wouldn’t miss it.
“We love the Dumms. How awesome a family can this be? We do nothing compared to the family. They are the heroes who do all the hard work,” she said. “They make lemonade out of lemons. It’s actually a privilege to work with them.”
Jen said she can never thank the community enough.
“We have felt the empowering embrace of this community from day one to today. Each and every event we have hosted has been filled with joyful attendance from our family, friends and North Royalton community,” she said.
For more information about Duchenne, visit joainc.org.