For over 14 of his 26 years Santa Clara native Matt Rupel fought Friedreich’s Ataxia (FA), a degenerative neuromuscular disease. In the early hours of Saturday, August 5, 2017 Matt’s battle ended after three weeks in the Stanford Hospital ICU. His family and friends were by his side every moment of his last 21 days.
Currently, there is no cure for FA, a rare disorder that affects 1 in 50,000 people in the United States. A weakened heart is the ultimate threat with FA, and that was what ended Matt’s life much too soon.
When he was diagnosed with FA, Matt quickly became the nexus for a super-community with one goal: Cure FA. Through a combination of Friedreich’s Ataxia In The Heart fundraising events, RideAtaxia events, and individual contributions, the community has raised hundreds of thousands of dollars toward finding a cure.
The Santa Clara Weekly began following Matt’s story when he was in middle school, and the outpouring of support and interest from the community helped him to continue to live an active and engaged life. In 2011, Matt told a fundraising group at St. Justin’s, “I have faith that I will always keep fighting. But if I fight this alone, I will fail. But if you will walk behind, I have faith that I’ll never surrender.”
Even when he became wheelchair-bound during his junior year in high school,
Matt refused to accept a diminished life. The next year his fellow students voted him homecoming king.
Matt graduated from Santa Clara University in 2013 with a degree in Communications and was the editor-in-chief of the SCU newspaper for two years. He later continued his studies with a series of programming courses.
He traveled extensively, visiting family in New York and Texas, soaking up sun in Hawaii, and touring abroad. He loved music and films. He geeked-out over Lord of the Rings, Harry Potter and Game of Thrones. An avid reader and writer, Matt recently co-wrote a script for an animation project and was in the middle of writing his first novel.
Growing up, Matt was always the kid who was friends with everyone, and everyone wanted to be his friend. Friends loved him for his deadpan humor, his intelligence, his adventurous spirit and his caring heart. As his body deteriorated, Matt showed resilience, bravery and grace.
Matt inspired people to reach higher. To keep our best aspirations in sight and to leave self-pity behind, no matter what barriers face us. To accept that sometimes, no matter how much we might wish otherwise, we have to be carried. To cherish our friends and family and make sure we tell them how much we love them. To value and nurture community. To allow ourselves to hope, even if the future we imagine might not be ours but someone else’s.
Matt never wavered from those principles. He volunteered for risky clinical studies, many of which were blind—participants don’t know which medicine they are taking. Now, his brain is being donated to FA research. Recent breakthroughs are leading to cautious hope by the scientific community that they will cure Friedreich’s Ataxia—and it will happen soon. When they do, Matt will be one of the heroes who got them to the finish line.
Matt’s death is a tragedy, but his life was a triumph. He will be sorely missed.
Kristi Wright is a local author. Proceeds from her first Basker Twins middle grade adventure go towards FA research. Contributions in Matt’s memory can be made to Friedreich’s Ataxia Research Alliance www.curefa.org.
