Hiking the Alps for a Cure

Amy Johnson sheds light on Huntington’s disease and supports Hopkins’ research

Amy Johnson calls her August hike through the Swiss Alps a trip of a lifetime. Not only was this destination on her bucket list; it brought her closer to her family. As the biomarkers program manager at Johns Hopkins Medicine began training for her two-week, 80-mile trek through the Alps, she was seeking both an adventure and a way to honor family members diagnosed with Huntington’s disease (HD). So, she created an independent fundraiser, Climbing Mountains to Cure HD.

Huntington’s disease is an inherited brain disorder that causes cells in certain areas of the brain to break down. The disease can lead to emotional disturbances, loss of intellectual abilities, and uncontrolled movements.

“My extended family has been impacted. I have cousins currently dealing with HD. I’m trying to educate and help people understand what the disease is and what it looks like,” explains Johnson. “I want to eliminate the stigma associated with Huntington’s.”

Johnson set a goal of raising $1,500 with the proceeds benefiting the Huntington’s Disease Center at Johns Hopkins. To help launch her fundraiser, she teamed up with colleagues in the Department of Psychiatry and Behavioral Sciences. She also shared Climbing Mountains to Cure HD on social media and was contacted by people around the world who have been affected by the disease. Even within her own family, Johnson shares how the disease was not always openly discussed, but that changed as she prepared for her hike — her loved ones embraced the idea to use their family story.

“Some of the donors didn’t even know me or my extended family, but they wanted to support Johns Hopkins,” says Johnson. “The Huntington’s research being conducted at Johns Hopkins benefits all of us no matter where we are in the U.S. or throughout the world. The research will benefit our generation and future generations.”

Johnson raised a total of $2,000 to support experts in HD research: Jee Bang, MD, MPH, clinical director of the Johns Hopkins Huntington’s Disease Center of Excellence, and Christopher Ross, MD, PhD, director of the Division of Neurobiology.

“Generous donations serve as the heartbeat of our clinic, providing crucial resources that allow us to maintain the highest standard of care for our patients and make a tangible difference in the lives of our patients,” says Bang. “Every contribution, no matter the size, represents a shared belief in our vision, enabling us to innovate, expand, and ensure every patient receives the best possible treatment.”

In Switzerland, Johnson was part of an international group led by a guide. They hiked all day with limited breaks, and at night the group stayed at hotels in small towns, moving on to their next destination by morning.

“It was a challenge for me physically. When you get above the tree line, it’s quite rugged. I hiked with an amazing group,” says Johnson. “I left the group for a couple of days and hiked by myself. It was an important part for me. It gave me the time to reflect on why I was there.”

When Johnson returned home to Baltimore, she was exhausted. But after a few weeks she was invigorated to start planning her next HD fundraiser. She even received an idea from her Australian group member — to hike part of the Italian Camino towards Turin, Italy. It’s a plan that’s already underway, tentatively set for next year.

Outside of planning her next hike, Johnson is excited to grow Climbing Mountains to Cure HD and to continue to bring awareness to Huntington’s disease.

“I know $2,000 is great, but I also know it’s a drop in the bucket. I hope I can do more,” she says. “When I visit the HD Center, they know who I am, they light up when I come in and I light up. This whole journey has given more to me than I think I’ll ever be able to give them — it’s been a family affair.”