Going the Distance to Make a Difference

by Sarah Bouy Published Mar 23, 2017 Last updated Mar 23, 2017

14-year-old Emily Quitzau is no stranger to a challenge. To date she has completed 6 triathlons, equally as many or more road races and has raised hundreds of dollars to support Duchenne Muscular Dystrophy. All before she has even set foot in high school, no less. Right now Emily is in the midst of fundraising for her next big adventure: JettRide, an annual bike race and fundraiser that brings teenagers from across the country together to raise money and awareness for Duchenne Muscular Dystrophy.

Emily has been watching JettRiders from the sidelines since she was nine years old, and it’s finally her turn to don a helmet and hit the pavement for the cause. This year’s JettRide is a 500-mile race that runs through New York, Massachusetts, and Vermont. While taking an active role in charity events is not foreign to Emily, a rigorous tri-state bike race on the other hand poses a new hurdle for Emily to tackle. Emily is ready for the journey, because a challenge is just another day in the life of a Quitzau. 

Emily’s brother Calvin was diagnosed with the degenerative muscle disease when he was five. Now Cal is limited to a wheelchair and is struggling to maintain the use of his arms. But instead of sitting idly by, the Quitzau family has confronted each obstacle head on and transformed it into something actionable. As they like to say in their family, “you can’t change it, but you can change what you do with the hand you’re dealt”. 

Emily’s mother Cindy points out that “Duchenne is a family disease,” as it greatly affects everyone involved. But with such hardship, you can choose to go through it in isolation or you can embrace your community and ultimately amplify your impact. Together Emily and her family have found strength in family, friends, and the greater community that has been touched by the Quitzau’s story and inspired to get involved in the fight against Duchenne. Over the years the Quitzau family has participated in and organized countless events to raise money and garner support for Duchenne research. Their activism has had a ripple effect as others have learned about Duchenne and thrown their support behind the cause. Gals for Cal and Pals for Cal are just a few active groups that have sprung up to support the Quitzau family over the years. “It’s really fun to know you’re doing things that are inspiring other people to get involved,” Cindy remarked. Deciding early on to take the mantle to raise money and awareness for Duchenne has had a ripple effect far broader than their family alone. 

Knowledge is Power 

Growing up as a triplet with two brothers with disabilities and special needs has profoundly shaped Emily’s outlook on life and opened her eyes to the realities of living with these conditions. There’s a lot Emily wishes people outside the Duchenne community could understand. For instance, people cannot imagine the extent of physical, mental, and emotional challenges Duchenne presents for families and loved ones. But at the same time, she wishes people could see her brother Calvin the way she does instead of letting the condition define him in their eyes. Calvin is a computer wiz with a great sense of humor, and when you’re with him it can be hard to get a word in edgewise.

“I think that living with the experience has made me a better person; I’ve learned to not judge so quickly,” Emily explains. Her exposure to individuals with disabilities, Duchenne in particular, allowed her see to how much more there is to a person, a family, and an illness than meets the eye. As a result, Emily is both an advocate and crusader. She commits herself to the cause and she sees it as her role to rally others to support these important issues as well. But her activism goes even deeper than merely encouraging friends and classmates to take part in a fundraiser or event. She wants people to get to know the real Calvin; the individual behind the causes they’re supporting.

Next Stop: Progress

When we spoke with Emily and Cindy last week, the FDA was set to decide on marketing approval of the first ever Duchenne drug in the US in just two days. Cindy herself joined 1,000 people from the Duchenne community in Washington, D.C. to advocate from the patient perspective on the hill ahead of the momentous verdict. The decision was ultimately postponed, but with the prospect of new advancements around every corner it’s an exciting time for those who know this challenging disease all too well. The Duchenne community is full of fiercely active members like the Quitzau’s, and a strong, committed support network is a powerful force to be reckoned with. 

On July 22nd Emily will set off on her 10-day long bike ride alongside her fellow JettRiders. In the meantime, she is training and continuing to fundraise for her trip. Currently Emily is at 74% of her goal and she can use your support. To donate please visit Emily’s fundraising page and don’t forget to check back to see her progress as she sets off on her journey with JettRide.