Our Stories
The DeLisi Family
For the DeLisis, a fear of what a COVID diagnosis could mean for Ethan is incredibly scary. Because of that, their family, and especially Ethan, has a lot of anxiety about being out of quarantine. This disease doesn’t just affect the boys physically, but can also affect their mental health. Ethan struggles with depression and anxiety. At home, Ethan has been busy snuggling and playing with his working dog, Stevie, reading James Patterson books, creating art, and watching “The Madalorian”. He and his brother have also been busy with LEGO creations!
Time is precious to the DeLisi family. Melanie asks for your support and help. “Duchenne Muscular Dystrophy is a terminal and fatal disease that will steal the life of our precious son and others if we don’t step in and fight it. This is a muscle wasting disease that affects the heart, lungs, swallowing, moving of fingers, toes, arms, legs and head. As parents we want to watch him grow up. Ethan and many others deserve to have the best quality of life and as full of a life as possible.”
“…Ethan and many others deserve to have the best quality of life and as full of a life as possible.”
Ethan DeLisi lives with Duchenne Muscular Dystrophy, a genetic disorder diagnosed when he was three years old. It is a very progressive disease, causing loss of muscle function and independence.
For three years, Ethan was enrolled in the Exondys51 clinical trial at the University of Minnesota Muscular Dystrophy Center. Every Wednesday he would receive an infusion of Exondys51 that promotes muscle growth. The FDA approved this treatment option in 2016 and Ethan is still receiving this same treatment with home infusions every week. His heart and lungs are still strong. Ethan’s mom Melanie shares, “There still is no cure. But we believe that having clinical trials provides ‘that something’ that can fight Duchenne Muscular Dystrophy. We do not have a lot of options readily available to help fight this disease like other diseases.”
Ethan and his family have had a much different year than they thought! He has been in quarantine since COVID began, except for two in-person doctor appointments at the U of M. The DeLisis were grateful for the great deal of precautions that were taken to keep Ethan and his family safe at clinic. He and his brother, Dylan (age 13) have both been distance learning to ensure they are able to keep Ethan safe. Not having that in-person socialization with their fellow classmates has been hard. One of Ethan’s goals for school is to expand his social skills. But with COVID and quarantine for safety, this has been an especially hard goal to reach. Due to COVID, the family’s favorite weekend of the year, MD Center Family Camp, was canceled. At camp everyone participates, wheelchair or not: sibling, parent, guardian all share experiences and go away with new resources and shared community. The support and friendships are invaluable.
The Misgen Family
Through the years, GMJF has raised millions of dollars for research in Minnesota. Money raised through the foundation’s activities goes to the University of Minnesota MD Center’s Gregory Marzolf Jr. Trainee and Grant Programs, which supports research projects that are working toward a cure for neurological diseases.
The U of M Medical School is recognized as second in the country for MD research, and its mission is to fund research, clinical care and educational programs related to Muscular Dystrophy is a big part of that.
The foundation is a Minnesota-based organization. “It’s good to have that element of keeping it local,” Steve, Nick’s father, said. “It’s also a way to fight back against the disease.”
“I know all the things I’ve accomplished having this disease, but I’d love to know, what if I were free, if I could do anything without having to think about obstacles and just live life like anyone else?”
–Nick Misgen
The Misgen family has been working to help find a cure for Muscular Dystrophy for almost 25 years.
Marybeth and Steve Misgen’s son, Nick, was diagnosed with Duchenne Muscular Dystrophy, the most common form of the disease, which affects predominately boys, just 11 days after his third birthday. Now 28, Nick attended school in the Stillwater Area School District, where he played viola, with the help of a device that Steve helped build, was in student council, participated in adaptive skiing and played power wheelchair soccer. He graduated with distinction from Stillwater Area High School and went on to earn his degree in health services management.
He has also been a longtime advocate for Muscular Dystrophy funding, helping to raise money for research in high school, and traveling to Washington DC to speak to representatives and senators to advocate for improved insurance benefits for complex rehab technology. Of his work, Nick has said, “I know all the things I’ve accomplished having this disease, but I’d love to know, what if I were free, if I could do anything without having to think about obstacles and just live life like anyone else?”
Muscular Dystrophy is a progressive muscle disease. Nick was able to walk until he was eight or nine, according to his mother, Marybeth, and then he used his power chair that he could drive up until a couple years ago, and he continues to lose his muscle strength.
The Misgen Family has been a long time supporter of The Greg Marzolf Jr. Foundation, of which Marybeth is the current Board secretary.
The Greg Marzolf Jr. Foundation was founded to commemorate the life of Greg Marzolf Jr., who was diagnosed with Muscular Dystrophy, with the goal of supporting research to find a cure while raising awareness about Muscular Dystrophy through various philanthropic activities.