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Record-Setting 125,000-Mile Motorcycle Ride Puts Myotonic Dystrophy on the Map

2025-07-02  |  21:55:06
Pat with his motorcycle in Portland, Maine.

Pat Cornell rolls through Portland, ME on his record-breaking 125,000-mile motorcycle journey—raising critical awareness for myotonic dystrophy (DM), a progressive, inherited disease affecting more than 150,000 Americans.

Pat with Friends and Family at Indian Motorcycle.

With friends and family cheering him on, Navy veteran and retired firefighter (9/11 first responder) Pat Cornell kicks off his 125,000-mile ride from Indian Motorcycle—igniting a national campaign to spotlight myotonic dystrophy (DM) and the families it affects.

Pat and the MDF Team at their Headquarters.

Pat Cornell stops at the Myotonic Dystrophy Foundation in Oakland, CA—meeting with staff to share stories, build community, and advance his mission to raise awareness and support for those living with myotonic dystrophy (DM).

This summer, a record setting journey is capturing hearts & uniting motorcyclists, rare disease advocates, and families living with myotonic dystrophy (DM).

We’re making breakthroughs in DM research—but public awareness and funding are still our greatest hurdles. That’s why voices like Pat’s matter so much.”
— Dr. Andy Berglund, The RNA Institute

OAKLAND, CA, UNITED STATES, July 2, 2025 /EINPresswire.com/ -- Patrick “Pat” Cornell—known on the road as “Vroom Old Man”—is a 60-year-old Navy veteran, 9/11 first responder, and retired firefighter on a mission to ride 125,000+ miles in 125+ days. His record-setting ride-in-progress isn’t just about miles; it’s about momentum—for raising funds, sharing stories, and spotlighting myotonic dystrophy, a little-known but life-altering genetic disorder affecting more than 150,000 Americans.

A Cross-Country Mission Fueled by Love

Pat isn’t chasing a record for himself. He’s riding for his wife Janice and her family, who have battled myotonic dystrophy for generations. “It’s affected our sisters, cousins, and nieces, grandparents, aunts, and uncles,” Janice says. “But Pat refuses to let the disease define our family’s future.”

Their mission is personal. Their message is universal.

What Is Myotonic Dystrophy?

Myotonic dystrophy (DM), the most common form of adult muscular dystrophy, is a progressive, inherited neuromuscular disease that can affect skeletal and smooth muscles, the heart, lungs, gastrointestinal system, endocrine organs, and brain. Because of a genetic phenomenon called anticipation, symptoms worsen and appear earlier in successive generations. The average diagnostic delay is 7–10 years, often leaving families misdiagnosed or without proper care for decades.

“I’m not doing this for me,” Pat explains. “I’m doing it for the families who live with this every day. I want them to know they’re not alone—and I want the world to know this disease exists.”

On the Road and Rallying the DM Community

As his wheels turn across the U.S., Pat is connecting with the DM community at every turn. On Day 43 of his ride, Pat visited the Myotonic Dystrophy Foundation (MDF) headquarters in Oakland, CA, where he shared stories from the road and learned more about how MDF is supporting families impacted by myotonic dystrophy.

Pat plans to meet with MDF Support Group Members, Board Members, Scientific Advisory Committee members, and industry partners. These visits create moments of powerful connection, raise local awareness, and elevate stories of resilience. Check out Pat’s live route tracker at https://spotwalla.com/trip/646c-14bf9d16-e0b3/view

“It’s not just a ride. It’s a statement,” Janice said.

Through every shared story and mile traveled, Pat is helping strengthen the national myotonic dystrophy community.

A Ride with Heart, Hope, and Horsepower

For Janice's family, DM has meant generations of loss and uncertainty. Pat’s ride is more than symbolic—it’s deeply urgent.

“We’ve watched this disease take too much from the people we love,” Janice shared. “This is Pat’s way of fighting back—with the full power of his heart, grit, and engine.”

Her sister, Diana Popik, added, “It’s exhausting to explain this disease over and over—to doctors, teachers, even friends. Pat’s ride is giving voice to families like ours.”

MDF CEO Dr. Tanya Stevenson called Pat’s journey “a powerful reminder of how one person’s love and determination can move a nation. His courage is sparking change and bringing our community together.”

MDF Scientific Advisory Committee Chair Dr. Andy Berglund emphasized, “We’re making breakthroughs in DM research—but public awareness and funding are still our greatest hurdles. That’s why voices like Pat’s matter so much.”

Turn Miles into Impact: Follow the Ride, Support the Mission

As Pat rides into his next city, he looks forward to meeting local families, visiting research institutions, and building bridges that will carry forward the fight against DM. Every mile brings us closer to visibility, understanding, and a cure for myotonic dystrophy!

To follow Pat's journey or contribute to his campaign supporting MDF, visit https://give.myotonic.org/Pat125

About the Myotonic Dystrophy Foundation

The Myotonic Dystrophy Foundation (MDF) is the world’s leading organization focused solely on myotonic dystrophy (DM). Through advocacy, education, support, and research funding, MDF is committed to enhancing the quality of life of people living with DM and accelerating the search for a cure.

Learn more at www.myotonic.org.

Kleed Cumming
Myotonic Dystrophy Foundation (MDF)
+1 415-800-7777
kleed.cumming@myotonic.org
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