Huntington's Disease Society of America
During a lifetime of wilderness ventures, Jason Evans has trekked countless miles through some of the most naturally beautiful places in the world; including the wilds of Borneo, peninsular Malaysia, Thailand, Indonesia, much of western Europe, Jordan and China, the northeastern and midwestern United States, and the Pacific northwest – where he is from, and where he lives today with his family.
In the beginning of May, the soft-spoken, family-oriented 37-year-old native Oregonian set out on his most ambitious endeavor yet: to thru-hike the 2,650-mile length of the Pacific Crest Trail (PCT); to draw attention to the sometimes devastating, life-altering effects of the genetic disorder known as Huntington’s disease, and to raise funds for research efforts to develop effective treatments and a cure.
To the uninitiated, Huntington’s is akin to Alzheimer’s and Parkinson’s – a kind of hybrid with a wide spectrum of similarly associated physical, psychological and emotional impairments – yet it’s less well-known than its infamous cousins. “Most people don’t know Huntington’s disease exists,” Evans says. Huntington’s disease is an inherited disease that causes the progressive degeneration of nerve cells in the brain.
George Harold Carlquist, Evans’ grandfather, died in February at age 86. He was known as Hank to his friends, and had suffered complications of the disease for many years. He was an accomplished tinkerer and master craftsman. Picnicking and camping with his daughters and grandchildren were among his greatest passions.
“Everyone knew something was going on with grandpa,” Evans says, “but it wasn’t until eight years ago that he and my mom were simultaneously diagnosed with Huntington’s disease.”
A number of years ago, Evans recalls, his mother Catherine admitted she no longer felt confident playing the piano or guitar. “She wasn’t as quick in conversation as she had always been,” he remembers, “too often when speaking casually, others finished her thoughts.” Everyone remembers that she had always been an artistic force in the family. Whether playing guitar by the campfire, or playing the piano and singing Christmas carols and show tunes as a family in the living room, music was a big part of their lives. Evans says this aspect of their family experience began to dim right before he left for college. “Today mom is in some ways a shadow of the vibrant and talented woman and teacher that she was. I would give anything for my kiddos to have known her as I did when I was young. Still, every time I see her, she amazes me by her thoughtful consideration and ability to communicate all the same.”
According to family history, those who carry the mutated gene in Evans’ family aren’t likely to develop symptoms till later in life. “Our family is fortunate,” he says, “many families with Huntington’s experience symptoms earlier in life.”
The family suspects Jason’s mom Catherine’s early-onset of symptoms stemmed from a nasty bout of encephalitis she contracted when the family trekked the jungles of Borneo during the early 1990s.
After Catherine’s diagnosis, during the first couple of years, the family recalls spending lots of time shuttling between myriad specialists and therapists. “Eventually we realized living life to its fullest took precedence,” says Evans, “these days we do the regular checkups, and mom and dad spend more time travelling, walking their dog, and entertaining family and friends at their home in Depoe Bay.”
Evans elected to get tested for Huntington’s after the diagnosis of his grandfather and mother.
Successive generations have a fifty percent chance of carrying the mutated gene when their parent is a carrier. Evans carries the mutated gene, and so knows his two boys have a fifty percent chance too.
Evans and his wife Nikki, have two creative and thoughtful sons – Aidan, 11, and Rowan, 8. Both are outstanding students, and working toward bilingual (English/Spanish) in the dual-immersion program at Garfield Elementary in Corvallis.
Speaking to how valuable awareness is: had his mother and grandfather been diagnosed before they had children, Evans says he and his wife could have opted for the available process to select for non-Huntington's embryos, otherwise having natural births.
“I am an avid hiker and have always been especially drawn to the Cascades in Oregon,” Evans says, noting that he has camped and hiked at many points along the PCT in Oregon. “The PCT has its own unique and special culture. In addition to the hikers (local or long distance), many former hikers and others go out of their way to support the efforts of other individuals.”
Evans’ family wholeheartedly support his five-month trek, which is plotted out to every 20-plus miles, including topographical maps, water availability, required calories, likely weather conditions, and other factors. Every two to three weeks, he will divert to the nearest post outlet for a package of supplies, and he plans rest days every ten days, in addition to the opportunity to spend several days in accessible campgrounds with family and friends.
To visit Jason Evan’s FirstGiving page, please visit: http://www.firstgiving.com/fundraiser/pacifictrek/pacificcresttrekforhd