Donate for Myotonic Dystrophy Community, Care, and a Cure
Support Jodie and Luke's 208 mile Seattle to Portland Ride on July 13!
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 Luke and several other family members were subsequently diagnosed, the Bolt Family 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 (STP) Bike Ride and raised over $11,000 for myotonic dystrophy research and support programs. In 2022, Luke and Jodie Bolt, MD again took on the STP Bike Ride, raising awareness and funds for myotonic dystrophy.
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.
After the incredible outpouring of support for their 2019 STP Bike Ride, Luke sought to keep up the momentum and inspire others with DM to get moving. The Bolt Family helped conceive of Myotonic Dystrophy In Motion, a care initiative launched by MDF in 2022 to unify, encourage, and inspire the international DM Community to engage and build an active lifestyle! In commemoration of its launch, Luke and Jodie wore the first batch of Myotonic Dystrophy In Motion cycling jerseys. Luke received MDF’s 2022 Above & Beyond Award for making Myotonic Dystrophy In Motion come to life!
In July 2024, MDF launched its first Myotonic Dystrophy In Motion Awareness Month. The Bolt Family is thrilled to participate in MDF's Movement Committee, which helped develop this special initiative. Once again, Luke and Jodie Bolt will be making the 208-mile journey from Seattle to Portland, wearing their Myotonic Dystrophy In Motion cycling jerseys, of course! A daunting endeavor for anyone let alone a someone living with DM1. Luke rides with a cardiac pacemaker and is challenged by swallowing dysfunction to drink while riding.
Together we can change the future of myotonic dystrophy!
