Pacific Crest Trek for Huntington's
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, 9. 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.
The Pacific Crest Trail
Located 100 to 150 miles east of the Pacific coast and closely aligned with the highest sections of the Sierra Nevada and Cascade mountains, the PCT winds through 25 national forests and seven national parks. Designated as a National Scenic Trail in 1968 and completed in 1993, the PCT bisects the Laguna, San Jacinto, San Bernadino, San Gabriel, Liebre, Tehachapi, Sierra Nevada and Klamath ranges in California, and the Cascade Range in California, Oregon and Washington. Its highest point is 13,153 feet at Forester Pass in the Sierra Nevadas; its lowest point is 140 feet at Cascade Locks at the Oregon-Washington border. Evans will begin the journey at the border with Mexico and trek until he reaches the end point on the edge of Manning Park in British Columbia, Canada.
Born in Roseburg, Oregon, this writer, philosopher and avid outdoorsman lived overseas for years when his parents took teaching positions in England, Norway and Malaysia. He graduated high school in Malaysia, earned a bachelor’s degree in English literature and philosophy at Hiram College in Ohio, and studied philosophy at New York City’s New School before returning to the Pacific Northwest to raise his family.
As a news-clerk and then reporter at the News-Times in Newport, Oregon half a dozen years ago, Evans completed a series of 12 monthly story-and-photo features about his favorite hikes in the Coast Range, in addition to covering a multitude of other local news.
In recent years, in addition to work in restaurants and with a sustainable family farm, Evans stays busy with occasional freelance writing assignments for Oregon State University’s college of engineering, plus landscaping contracts, building fences, and digging ditches.
“I find myself at a crossroads,” says Evans, “The great outdoors has always been my muse, whether scuba diving, cross-country skiing, hiking, camping, or fishing and canoeing with the family.”
Hiking the PCT with the cause of Huntington’s awareness pinned to his heart comes easy, “I hike in the hope possible risks to future generations may be mitigated someday,” says Evans, “Folks whose families have been affected by Huntington’s and the extended community are welcome to join me to walk for a while, or picnic at accessible campgrounds throughout my journey.”
Evans is documenting his trek via Facebook and this first giving page. All are welcome to follow. To find Evans on Facebook, just search for Jason Evans and click on his profile picture of a purple thistle flower and bee.
Sporthill, Danner, Backcountry, Rogue and Bad Dog are among companies who have provided generous donations.
Individuals interested in joining thousands of others, working to further the mission of HDSA, are encouraged to support Evans' journey through donations directly to the northwest chapter of HDSA via this page.
"I hope people from around the world will consider donating a penny-per-mile, or $26.50 - we can make a difference."
Having trekked plus and minus 488,300 and 489,300 feet elevation all told, 2670 miles on trail from Mexico to Manning Park in Canada, in addition to plenty of wayward adventures, Evans completed the Pacific Crest Trail on September 13; two days ahead of his personal goal of four and a half months.
"Furthering the ongoing mission of the HDSA," says Evans, "in the search for effective treatments and a cure, has been an awesome adventure and among the greatest experiences of my life." Evans extends his heartfelt thanks to all for their support and donations. "I will continue to post favorite trail stories on my Facebook page in the coming weeks."
"In many ways," says Evans, "those of us with HD will become shadows of our former selves." In the spirit of John Muir, the avid outdoorsman and self proscribed lover of the range of light, he says, "I hiked for the important place each of our shadows holds."