Looking for a cure on Mt. Whitney

Standing at the summit of Mount Whitney in California, Julie Jumisko was not sure what to think. She had no lifelong plan to climb any mountains, her feet were blistered and sore, and she was afraid of heights. Yet, at more than 14,000 feet, Jumisko, who earned a bachelor's degree in behavioral science in 2006, remembered exactly why she set out on her trip: she was there for Gus.

Gus is Jumisko’s sister’s nephew. He was diagnosed with Duchenne muscular dystrophy, a genetic disorder characterized by muscle degeneration and weakness. Although Jumisko did not know Gus when he was diagnosed, she immediately wanted to help.

There is no cure for Duchenne’s, and Jumisko said pharmaceutical companies are not actively researching one. All fundraising for Duchenne’s research is done by individuals who created websites like Hope for Gus and the Duchenne Alliance that raise awareness for Duchenne’s through donations.

While looking for more ways to get involved, Jumisko learned that many groups organize hikes and trips as fundraisers for Duchenne’s research. Originally, Jumisko was going to join a group heading to Mount Everest in Nepal. However, after learning of various challenges, such as suspension bridges associated with the hike, she decided to wait for another opportunity.

“I’m completely afraid of heights,” Jumisko said. “After hearing about the Mount Whitney hike, which was supposed to be an easier one, I signed up right away.” 

The idea behind challenging hikes is to make participants live a day in the shoes of someone with Duchenne’s. The syndrome makes walking and breathing challenging, and hikers often encounter these struggles. As an unexperienced hiker, Jumisko said she was not prepared for the toll the hike would take on her body: she was incredibly sore and her feet were covered with blisters.

“I’ve always heard that the key to a good hike is proper footwear,” Jumisko said. “I should have listened to that, because I learned it the hard way.”

On top of the physical toughness of the hike, Jumisko dealt with her own personal fears. The closer she got to the summit, the more she doubted her ability to complete the hike. On the last few days of hiking, she asked travelers who were coming back from the summit about how challenging the heights would be.

“We passed a woman who said there were sheer cliff drops as you got close to the summit,” Jumisko said. “I didn’t want to hold everyone else back, so I almost convinced them to go on without me.”

Yet, Jumisko carried on. Her group reached the Mount Whitney summit on August 23, eight days after they started. Months after the hike, with her feet fully healed, she said she was grateful for her ability to participate in the trip.

“Duchenne’s takes away so much from the children and the families who are dealing with it every minute of the day,” Jumisko said. “If I can push myself out of my comfort zone for eight days, I feel like it is the least I can do.”

Jumisko said she wants to participate in more events. She is looking at half marathons, and someone broached the idea of going to Mount Kilimanjaro. While she is still figuring out what she will do next, she has no doubt her passion will continue to grow.

“I want to know that we can find a cure and that I was an active part in the process rather than just sitting by idly,” Jumisko said.