A Nova Scotia woman is about to embark on a big mission to honour her little brother who suffers from a devastating neurological disease.
In an interview with our newsroom, Brianna Voss, 27, tells us that 17-year-old Connor has Juvenile Huntington’s disease.
To raise money for the Huntington’s Society of Canada, she will walk 200km in four days from Lower Sackville to Amherst.
“That’s where my brother’s care home is,” explains Voss. “So, initially, my kind of idea was walking from his place to our home in Amherst. Kind of like bringing it home for my family.”
Voss says Huntington’s is often compared to having the same symptoms as ALS, Alzheimer’s and Parkinson’s all in one.
It’s also heredity and claimed the life of her grandmother, father and aunt.
“[It] runs in our family. It started with my grandmother. She was adopted. So, we don’t really know where it came from before then,” says Voss.
Survivor’s guilt
She says her brother was 13 when he started having symptoms but not fully diagnosed until he was 17 and now lives in a care home.
“He’s kind of heading toward the later stages of the disease. With juvenile, it goes a little bit quicker than regular Huntington’s,” explains Voss.
Voss tested negative. But with that, she says, comes guilt.
“I wish every day I could switch positions with him,” says Voss. ” That’s kind of why I’m doing this walk. I think that if I’m the only able bodied one out of the family, then I guess it’s a little bit my mission to spread awareness.”
Brianna Voss with Mayor Andy Fillmore acknowledge Huntingon’s Disease Awareness month. PHOTO: BRIANNA VOSS FACEBOOK/WITH PERMISSION
Why do the walk now?
May is Huntington’s Disease Awareness Month.
In addition to that, over the past year Voss says, there was a trial in the UK that seemed very successful in slowing down the progress of the disease.
“It felt like the time. There’s a lack of awareness, there’s a lack of funds and there’s a lack of research being done,” explains Voss.
“It just seems like there’s been some pretty big movements around the world and I think they could use support right now.”
Training
The reason the walk is at the end of the month, Voss says, is so she could train for it. And it hasn’t been easy.
“I’ve never walked this much in my life. The hardest part is the actual physical side of walking. The mental part of keeping your brain occupied for hours while you do it,” says Voss.
Even still, she says, it’s kind of nice to get some mental clarity while walking. And while she prepares, the event has already raised thousands of dollars.
Voss says it’s hard to describe how it feels to see the money flow in, now reaching about $14,000.
“I would say it’s a relief but that’s not the right word,” explains Voss. “It feels pretty good.”
“At the end of the day, regardless of the amount we end up raising, we’re spreading so much awareness right now.”
Some of the videos she’s posted online have reached over 2 million views.
The walk is from May 30 to June 2.
