Family walking to support ALS
Like many others across North America, Casey Marchant accepted the ice bucket challenge—dumping freezing cold water on her head in support of Amyotrophic Lateral Sclerosis (ALS), a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.
The ice bucket challenge recently swept social media, with people nominating participants to be filmed having a bucket of ice water poured on their heads and challenging others to do the same.
But Marchant has been supporting the cause for years, taking part in the ALS Association’s “Walk to Defeat ALS” in Minnesota.
And she’s thrilled with the recent outpouring of support from the ice bucket challenge.
“Any publicity is good publicity,” the Fort Frances resident stressed.
“Many people hadn’t heard of ALS and now they have.”
Marchant noted there are organizations for other causes they are widely known, but the ALS Association isn’t usually one of them.
“So it’s good to see it in the spotlight,” she reasoned, citing even if people aren’t donating and only accepting the ice bucket challenge, at least they are talking about it.
She also said the timing is right for the challenge because summer and fall is when the ALS walks take place across Canada and the U.S.
“These alone don’t bring in enough money, though,” Marchant conceded, though she’s hoping with all the attention given to ALS lately that more people will donate to those participating in the walks.
“But the amount raised from the ice bucket challenge is phenomenal,” she enthused.
As of Saturday, the ALS Association reported it had received $62.5 million in donations, compared to $2.4 million during the same time period last year (July 29-Aug. 23).
Marchant added the challenge also has allowed celebrities and others to share connections they have with ALS.
“You don’t often hear how ALS has affected someone and now we are hearing more of it,” she remarked.
She said the cause is near and dear to her heart because she watched her grandmother struggle with ALS for years before it took her life in July, 2011.
Bea Harala of International Falls was like a mother to Marchant.
“She lived next door and had a big hand in raising me,” she noted. “I am who I am because of her.”
When Harala began seeing symptoms of ALS, Merchant said no one could figure out what was wrong.
She finally was diagnosed—and it was a rough diagnosis for her and her family.
“She slowly started to lose control of her motions, everything,” Marchant recalled.
“And my grandma talked with her hands, so it was difficult when she couldn’t do that anymore.”
She said her grandmother also loved to sing but the disease eventually took her ability to talk.
ALS patients also experience increased difficulty in moving and swallowing, so they need to be fed through a tube.
“It was very hard to watch,” Marchant admitted, citing she remembers her grandmother’s house looking like a hospital room with plenty of equipment that she needed to help her with basic everyday living.
Harala raised financial support for this equipment from the Minnesota chapter of the ALS Association, which is why Marchant’s family has been taking part in the walk in the Twin Cities area for the past few years.
She said her grandmother was with them for their first walk. And while she didn’t participate, she was there waiting for everyone to finish.
“It’s just important for us to continue to support the cause in her memory,” she stressed.
With funds going towards patients with ALS and to ALS research, Marchant is hoping a cure will be found one day.
“Right now there is no cure, no treatment,” she noted, adding while some people do physical therapy, they don’t get their back strength back.
“People have to learn to live differently and to accept help because once it has progressed, you can’t do things yourself.”
Marchant also said ALS doesn’t discriminate.
“It affects all ages, all races,” she explained.
According to the ALS Association, the disease most commonly strikes people aged 40-70, and as many as 30,000 Americans have it at any given time.
The cause of ALS is not completely understood, although research has discovered a hereditary factor.
“It wasn’t until my grandma got sick that they started to think her grandmother might have suffered from ALS,” Marchant noted.
“So that’s something I think about,” she admitted.
“It’s in the back of my mind for me, my siblings, cousins, and kids.”
Marchant said while their team for the ALS walk is small, her family does what they can and raises as much as they can.
They are holding a bake sale fundraiser this Saturday from 9 a.m.-1 p.m. at the Clover Valley Farmers’ Market here.
“There will be muffins, cakes, cupcakes, bars, cookies, lemonade, and more,” she noted, adding she’s thankful to those who donate baking to help out.
“My friends are great. They know how much this means to me,” she enthused, noting they raised $300 at the bake sale last year.
The Marchant family also will be holding a backyard movie night for their friends, charging $2 admission as a fundraiser.
The money will go toward the ALS Association at the Twin Cities Walk on Sept. 20.
“It’s a 5K walk and we’ll be out there rain or shine,” Marchant pledged, adding she also volunteers to help out at the event, selling T-shirts or whatever is needed.
And Team “Bea’s Knees” carries a sign in memory of Harala, who they wish could be at the walk with them.
To donate to the ALS Association, visit www.alsa.org
Or for the ALS Society of Canada, visit www.als.ca
A “Walk for ALS” also will be held Sept. 27 in Thunder Bay.