As part of Myotonic’s Dash & Dine fundraising program, Eric Jensen and his three-year-old son River will be cycling through the state of Iowa in the Des Moines Register’s Annual Great Bicycle Ride Across Iowa (RAGBRAI), July 20-26. The Jensens are dedicating their journey to families affected by DM. River's Ride will raise funds for Myotonic while educating and informing the public about the disorder. Both River and his mother Taylor have DM1.
“We want to inspire hope for a cure for all those affected by DM,” says Eric. “Our family is so blessed that we’re able to go on this adventure together. We know that many people living with DM are not as fortunate as we are, and so we ride in their honor.” The Jensens will be documenting their bicycle ride online so that the DM community and others can be a part of the adventure. With more than 10,000 RAGBRAI participants and thousands more volunteers and spectators, River’s Ride intends to educate the public about DM throughout Iowa and beyond.
Eric’s wife Taylor was diagnosed with DM1 shortly after River was born. After a wonderful pregnancy and delivery experience, Taylor suffered muscle weakness and was ultimately referred to a neurologist, who diagnosed her with DM. River was then tested and diagnosed shortly before his first birthday. “It brings you to your knees,” says Eric. “Taylor’s diagnosis was so difficult, especially for me, and then for River to be diagnosed with DM, it was devastating.”
Shaken at first, the Jensens took some time to let the diagnosis sink in, but in a few short months they were learning everything they could about DM. That’s when they came upon Myotonic, finding much needed support and up-to-date information on myotonic dystrophy. The Jensens have since begun holding annual fundraisers for Myotonic. “It was important to us that Myotonic not only provided support and information for families but also focused on funding research.” The Jensens were especially interested in the funding of scientific fellowships specifically dedicated to DM research. Eric Jensen is a veterinarian and explains, “As a scientist and clinician, I know the importance of funding research, especially young DM researchers. Myotonic’s Fund-a-Fellow program provides up and coming scientists with opportunities to work with experienced principal investigators, seeding the future of DM research and helping discover and advance new therapies."
Since finding Myotonic in 2012, the Jensens have been 100 percent committed to helping find a cure. “It is our coping mechanism,” say the Jensens. Eric however admits he still feels great anxiety about what the future may hold for his wife and son. “The unknown is the most difficult thing for me, but my wife Taylor is the rock in this family and she always reminds me how incredibly fortunate we are - she keeps me going,” he says.
The Jensens live in San Diego, California, however Eric was born and raised in Iowa. "It is a wonderful place - I have many fond memories of growing up in Iowa and have dreamed of sharing my home state with my son,” Eric says affectionately. “For years my friends have talked about RAGBRAI and I’ve always wanted to participate in the ride. This seemed like the perfect opportunity for us all,” he says. “The chance to experience Iowa on a bike is perfect! There’s no better way to smell the corn fields, feel the humidity and meet the incredibly kind and hospitable people of Iowa than on a bicycle riding across the state.”
Taylor will drive the route with Eric’s sister Becka and her family, and camp out along the way. River will have mom, Aunt Becka and family to provide a nice respite when he's ready to get off the bicycle during the 418 mile cycling event, while giving him the chance to play with his cousins along the way. Eric’s other Iowa family members will support Eric and River throughout the route and help spread the word about DM and River’s Ride.
An avid bicyclist, Eric rides his bicycle to work each day as Managing Veterinarian for the US Navy Marine Mammal Program. In preparation for River’s Ride in Iowa, Eric and River ride about 30 miles each weekend. “Keeping River enthusiastic about getting on the bike has been a priority so we sing and talk along the way and we especially like taking in the wildlife and nature you can only see by bicycle.”
When asked what Eric wants for his son’s future, Eric says tenderly, “I want him to grow up and live a fulfilling life full of wonder. I want him to be able to pursue his every passion in life.” Eric says of his son, “River is a very physically active and animated little boy who loves the water and outdoors and I don’t want that to change. I want a cure for River and other children and families affected by DM.” The Jensens say encouragingly, “Researchers are close to promising clinical trials and possibly successful treatments. We’re committed to helping play a role in making that happen.”