From April 16 to 20, we’re celebrating National Volunteer Week! We’re so thankful for our MDA volunteers who give of their time and talents to help families with muscular dystrophy, ALS and related diseases. If you’re an MDA volunteer, consider this your virtual hug from us! If you’d like to become a volunteer, we’d love to meet you.
Each day this week we’ll be sharing the story of one of our amazing volunteers. Today, meet Mike Wernet — a devoted MDA Summer Camp and MDA Muscle Walk volunteer.
If you have ever participated in an MDA Muscle Walk event in Southern California, chances are you have encountered Mike Wernet of San Juan Capistrano. The retired auto mechanic is a mainstay at Muscle Walks throughout the region, having been inspired to volunteer ever since being diagnosed with mitochondrial myopathy in 1996 at the age of 46. Now 67, Mike and his family participate in as many as four walks per year. He has found it a great way to give back to an organization that has played an integral role in not just his own life but also the lives of others.
Diagnosis and getting involved
In 1996, Mike was diagnosed with mitochondrial myopathy, a form of muscular dystrophy that affects the mitochondria in cells and that can cause muscle weakness, balance problems and other symptoms. For Mike, the diagnosis came as a shock, but he had a good sense of where to turn next.
“My wife, Susie, and I always used to watch the MDA Labor Day Telethon, never knowing it would come into our lives later on,” he says. “We contacted MDA, found out about volunteer opportunities and from that point on, I have volunteered at every event that MDA does in my area.”
Since 1996, Mike and his family have participated in numerous Muscle Walks, and in the last year alone they have attended walks in the counties of San Diego, Los Angeles, Orange and San Luis Obispo. Team Wernet consists of Mike, Susie and their family and friends.
Although he does not walk in the events himself, Mike is a visible presence on walk day, handling various duties and meeting with Muscle Walk participants.
“I do registration at the walks,” he says. “At some of the smaller walks, like at Pismo Beach on the Central coast, I get to meet every single person.”
His team also goes above and beyond walking.
“Part of the team walks and about half end up volunteering in other ways, such as taking pictures,” he says. “We almost don’t have time to walk — we’re too busy volunteering.”
Why he walks
Although Mike lives with a form of muscular dystrophy, he and his Muscle Walk team are especially passionate about raising money to send kids to MDA Summer Camp. Since 2011, Mike has volunteered at Irvine Ranch Outdoor Education Center in Orange, Calif., and, having served as camp activity director in previous years, has seen firsthand how Summer Camp has a positive impact on kids.
“I’ve done five or six different Summer Camp locations,” he says. “Seeing the smiling faces on the kids who get to go to Summer Camp, it really inspires you to go out and raise money at Muscle Walk.”
Muscle Walk is also a great opportunity to meet other families affected by neuromuscular disease. For Mike, the camaraderie is a highlight of the event.
“It’s encouraging to see those who have a family member with a disease, how they get their friends and family involved for their walk teams,” he says. “It’s encouraging to see them try to make a difference in their lives and in the lives of other people.”
Advice for others
Mike highlights that there are several ways the money raised can be put to work.
“Funds can go toward something like Summer Camp or toward research for a certain disease that you or a family member may have,” he says.
For anyone considering participating, or who may be thinking about starting a team, Mike has this to say:
“To someone on the fence, I’d say that the MDA offers hope. In my time over the last 20 years, kids are living longer, more rewarding lives. When the MDA was formed, boys with Duchenne were living to 12, maybe 14 years old. Now they are living into their 30s. And now there are treatments that are available that can help people. Kids are going to college and are living independent lives. That’s hope right there. In my lifetime there’s been a major change, behind which MDA has been a driving force.”
Get involved with Muscle Walk today!