Donate now to fund Community, Care, and a Cure! image

Donate now to fund Community, Care, and a Cure!

Support Luke and Jodie's 206 mile Seattle to Portland bike ride on July 16, 2022!

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Donate for Myotonic Dystrophy Community, Care, and a Cure

Support Jodie and Luke's 206 mile Seattle to Portland Ride on July 16!

When Luke Bolt was 13, he noticed his hands would lock in contraction with use and were weakening. After his mother Jodie, a neurologist, heard about the problem, myotonic dystrophy (DM) was on the top of her list of possibilities. Despite Luke's diagnosis with DM1, and subsequent diagnosis for other family members, they pursue an ambitious athletic agenda, understanding the benefits of exercise and conditioning to combat the DM process.

Myotonic Dystrophy (encompassing DM1 and DM2) is the most common form of muscular dystrophy, affecting multiple body organ systems, with variable ages and modes of presentation, yet unlike many other genetic diseases, it is without a specific cure or approved therapy at this time.

Connecting with the Myotonic Dystrophy Community

After their diagnosis Jodie, Luke, and Steve began searching for more information and found the Myotonic Dystrophy Foundation (MDF), which provides numerous resources for people with DM, families, and caregivers; and generously funds researchers with the overarching goal of finding disease specific interventions.

As the Bolt Family learned more about the Foundation and its mission, they were determined to find ways to volunteer and support the organization that is changing the lives of people living with DM. In 2019, the Bolts organized their first grassroots fundraiser at the 40th Annual Seattle to Portland Bike Ride and raised over $11,000 for myotonic dystrophy research and support programs. Click here to read about Jodie, Luke, and Steve's first grassroots fundraiser.

The Inspiration Behind Myotonic Dystrophy In Motion.

"Studies show that moderate exercise is safe and may be effective for individuals with myotonic dystrophy. Even though exercise does not cure myotonic dystrophy, it can help optimize function and maintain strength." - MDF Exercise Guide for People Living with Myotonic Dystrophy.

Initially inspired by the Bolt Family's STP ride, MDF recently launched a new care initiative to unify, encourage, and inspire the international DM Community to engage and build an active lifestyle, Myotonic Dystrophy In Motion! In commemeration of its launch, Luke and Jodie Bolt, MD will be wearing the first batch of Myotonic Dystrophy In Motion cycling jerseys as they take on the 206 mile Seattle to Portland biking event on July 16th! A daunting endeavor for anyone let alone a someone living with DM1. In 2022 Luke rides with a cardiac pacemaker and is challenged by swallowing dysfunction to drink while riding.

In honor of Luke and Jodie's incredible undertaking, please click here and consider making a donation to MDF to aid research for Myotonic Dystrophy!

Together we can change the future of myotonic dystrophy!

Preparing for the 2022 Ride.

Photos from the Bolt Family's 2019 Seattle to Portland Ride:

"Refueling. Hot and sunny on Sunday."

"Phillip Bolt, big brother and weekend driver, dropped us off in Seattle and met us in Portland"

"I made it to Portland, now for some real food!"

Jodie wearing her MDF Bike Jersey, "Our shirts got so many nice comments."