Rare Disease Report

School Principal Walking Across Canadian Province for Huntington's Disease

AUGUST 03, 2017
Mathew Shanley
After losing his mother-in-law to Huntington’s disease (HD) in April after her 20-year fight against the condition, Vanguard school principal Greg Shwaga is using his summer break to walk across the Canadian province of Saskatchewan to raise funds and awareness.
The trip started on July 10 in the town of Macklin, near the Alberta-Saskatchewan border and he has been walking toward his Manitoba destination ever since.
HD is known for the devastating physical, psychological and cognitive effects it can have on a patient. The genetic and neurodegenerative disorder progresses rapidly from dementia-like symptoms into a complete loss of muscle function, and there is currently no known cure.
“My walk will be roughly 700 kilometers. My plan is to cover about 50 kilometers per day. I hope to meet with and talk to as many people as I can,” Shwaga said on his blog before starting his journey. “I am looking forward to hitting the road, seeing our wonderful country and its people up close, and doing my part to help the people and families afflicted with this horrendous disease.”
Considering his occupation, Shwaga could take on this task without it impacting his career. Having off for the summer has allowed him to walk nearly 40 kilometers (24.9 miles) per day, and he has already raised more than $18,000 for his cause.
“I’ve been asked before, why should we care really? The statistics right now 1 in 7,000 Canadians has Huntington’s, 1 in 5,000 is at risk and 1 in 1,000 is affected in some way because of a family member or friend has Huntington’s,” said Shwaga in an interview with Yorkton This Week.
“What I’ve also answered to that question is that we can test for those genes, we know who’s going to get it, we know how the disease progresses, it’s a sitting target, it’s fairly predictable. In many ways, it seems like a disease we can cure sooner rather than later.”
While the trek has taken a toll on him physically, Shwaga says that his awareness efforts have resulted in many contacting him to discuss their own personal connections to HD, whether it is their own battle or the battle of somebody close to their hearts.
Those interested can keep track of Shwaga at www.igslearn.com. In his most recent blog, Shwaga wrote:

"Seth and I were having lunch in Unity, when the waitress asked what I was up to. I told her that I was walking across Saskatchewan in order to raise awareness about Huntington Disease.  As she went back into the kitchen we could hear her tell the cooking staff: “Hey that guy is running across Canada for Parkinson’s.”
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