Category: Ice Bucket Challenge

Margot Algie heard about the ALS Ice Bucket Challenge in 2014 through friends and had no idea that only one year later, she would be diagnosed with the disease.

Since then, she has come to understand firsthand the importance of maintaining the momentum of the viral social media phenomenon that resulted in a $21.5M investment in Canadian ALS research. Margot is urging everyone around her to take the plunge and join the fight to end ALS. “Please, please, please take part in the ALS Ice Bucket Challenge,” she says. “It’s time to put another huge chunk of money towards research so we can find new drugs that can hold ALS at bay. We have to stop this disease from killing us.”

Despite the challenges Margot faces on a daily basis, she is the kind of person who always pushes through. “I won’t give up and say ‘woe is me,’” she says. “I just keep finding ways to overcome or compensate, whether it’s using an app to help me type, or adapting to my motorized wheelchair that was provided by the ALS Canada Equipment Loan Program.”

It’s hard to accept that everything happens at a “snail’s pace” these days, but patience is one of the qualities Margot is drawing on to settle in to her new routine. “Once you’ve got one new thing down pat, it seems there’s some other hurdle you have to adapt to just around the corner,” she says, “but I am more patient with others now, and more patient with myself. I’ll give you an example: instead of raising my voice in frustration and perhaps uttering choice expletives, I’ll take a deep breath, smile and say bring it on.”

When Margot was diagnosed with ALS, her colleagues at ICE (Integrated Communications and Entertainment) organized their own challenge by throwing a big “Bucket List” fundraising event for Margot. The goal was to raise enough money to check off as many of her own personal bucket list items before the effects of the disease progressed. Because everyone progresses through ALS differently and there’s no way to know the course it will take, time was of the essence.

“The best part about the event was the chance to reconnect with people I hadn’t seen in more than a decade,” says Margot. She is also tremendously grateful for the overwhelming show of love and support and overjoyed by the chance to tick off many items on her list, including her number one wish, to see Van Morrison perform live at a dinner theatre in Ireland. “There was a huge sense of community that really turned my thinking around. It gave me a reason to keep living with the time I have left,” she recalls.

Time is often on Margot’s mind. “I dwell in the short term,” she says. “I think about what I have to do today and how much time it will take to do.” Waking up each day brings new challenges that are harder and harder to overcome. She responds by trying to cherish each moment. “I am literally stopping to smell the roses,” she says, “hoping I can reach out and pull the branch towards my nose so I can take in the scent.”

Sadly, some bucket items are no longer within reach. Margot has always loved dogs. She owns a boisterous 13-month old English Setter, Charlotte. Though her wheelchair gives her the independence to accompany her partner, Roger, on their dog walks, she can’t control Charlotte on the leash on her own anymore. Even hugging her puppy is difficult. “If I could, I would have gobbled her up and cuddled with her while she was growing up, but instead I try just to pat her,” explains Margot. “By the time I get my hand near her she moves and I can’t do it because my motions are so very slow.”

“This is the start of a new chapter, perhaps even a new book,” Margot says in a moment of reflection. Her resilience and determination to make the most of each day help her accept the fact that she can no longer work or get out of the city on weekends like she used to. Receiving support has helped, including equipment from the ALS Canada Equipment Loan Program that would have been difficult to purchase on her own. In turn, Margot is giving back to the community by fundraising for the Walk to End ALS and facilitating ALS support groups at the Sunnybrook ALS Clinic in Toronto.

There is no time to waste. ALS is devastating the lives of 3,000 Canadians and their families every year.

It’s about time we added “end ALS” to the bucket list – take action today. Your generous support will help provide community-based support services for people and families living with ALS in Ontario; it will contribute to funding research and to federal and provincial advocacy initiatives within Ontario.

Beth Robertson’s husband, Tim, lived courageously with ALS for 12 years. He was sustained by the loving presence of his wife, Beth, his three children, and a large network of family and friends. Beth says she would do it all over again for Tim, but she admits ALS is a terrible burden for everyone it touches.

Looking back, Beth says Tim’s selflessness helped keep the family resilient and supportive with each other. “He let us continue to lead our lives. It helped that I kept my job teaching,” recalls Beth. “It was good for me and it helped Tim and I remain strong as a couple. I got frustrated when people called me a caregiver not his wife. I was his wife. We were husband and wife living with this thing and we just kept going.”

80% of people diagnosed with the disease will not live as long as Tim did. “ALS dominated every aspect of our lives. I can hardly remember what it was like before, but I remember every single moment when Tim was living with it. Every time he went into a little slump. Every time you’d see a decline. Where he sat on the back deck watching me garden when he couldn’t garden with me anymore.”

When Tim survived beyond the average two-to-five-year prognosis, Beth remembers imagining the possibility of more time with him. She hoped he might live a long life like Stephen Hawking, but she also harboured fears about how challenging it would be to live without hope of a treatment to stall or reverse Tim’s symptoms and how challenging symptom progression would be for the family.

“There’s no blessing in this. It’s a tough journey,” admits Beth. “Even though we had more time and Tim was fortunate to see his children graduate from high school, it’s hard to give a positive final message that is honest.”

Today, she is hoping for greater investment in ALS research so that researchers can better understand why people have ALS and how treatments can halt the disease early in its tracks. That’s why Beth participated in the ALS Ice Bucket Challenge three times and why she hopes the momentum will continue. “One time, I dumped the bucket on Tim in his wheelchair and then on me. I was so focused on me that I didn’t realize Tim still had a pile of ice on his head. Poor Tim,” she says. “I felt so bad for him. He never complained though.”

Investing in research is a priority for Beth but she is also deeply concerned about the availability of direct support for families living with ALS. She says ALS Canada plays a critical role by providing equipment, education, and emotional support but as a donor-funded organization it can’t do everything. It’s time for the federal government to do more to relieve some of the heavy financial burden on families living with ALS. “We were lucky to be able to afford things like retrofitting a van,” says Beth. “But what about the people who don’t have the money? I can’t imagine what that’s like.”

She says it’s also time for provincial governments to step up. In long term care homes for example, people relying on BiPAP machines to assist with breathing can be and have been refused access because of a shortage of trained staff to handle the equipment. “If people are going to live longer lives with ALS as a result of new treatment options, we need to make sure there are more resources in place to help them and support their families, including access to facilities and additional home support” insists Beth.

Now that Tim is gone, Beth is continuing to fundraise and volunteer for ALS Canada to help change the future for others. She’s giving her time because there’s no time to lose.

“I love volunteering in the office once a week. Everyone is so passionate and works so hard. I can see firsthand how well ALS Canada invests the money they raise,” says Beth.

Canadians unite. August marks the one year anniversary of the ALS Ice Bucket Challenge. The premise of the Challenge remains intact – Canadians can dump buckets of ice and water over their heads and challenge three people do the same and donate to an ALS Society across Canada. In respect for the environment, Canadians are encouraged to either save the water or use recycled water when getting involved this year.

Amyotrophic lateral sclerosis (ALS) is a terminal neurodegenerative disease in which motor neurons or the ‘living wires’ that connect the muscles to the brain degenerate, robbing the person living with ALS the ability to walk, talk and eventually breathe. There is no effective treatment or cure and most people will die within two to five years. ALS is indiscriminate of age, ethnicity or sex and only 5-10% of people diagnosed will have a hereditary link.

“The funds and awareness raised from the ALS Ice Bucket Challenge replaces discouragement with some reassurance that the ALS Community is not being overlooked and allows hope to sprout that a treatment or a cure is one day possible,” said Brian Parsons. “That’s why we have to keep doing the ALS Ice Bucket Challenge this August and every August until a cure.”

Last year Canadians donated $17 million to ALS Societies across Canada. From these donations $11.5 million was allocated to ALS research and $4.4 million to help people living with ALS across the country. Additionally Brain Canada responded to the generosity of Canadians by matching $10 million from the ALS Ice Bucket Challenge funds. ALS Canada has active competitions underway which will see almost $15M invested in 2015 for grants, awards and research support as a result of the 2014 ALS Ice Bucket Challenge, a partnership with Brain Canada and annual fundraising initiatives. Further investments are underway for equipment and services which will provide support for people living with ALS and their families throughout Canada. This is an unprecedented investment, but a drop in the bucket compared to the need.

“We are so grateful to Brian and Pat and the ALS Community for their challenge of ‘Every August until a cure’ and bringing forward the ALS Ice Bucket Challenge into 2015,” states Tammy Moore, CEO ALS Canada. “The financial burden of $150,000 – $250,000 is massive for families and the ALS Societies across Canada do much to provide support for the 2500 to 3000 Canadians through the provision of equipment and support services for people coping with the disease. Approximately one thousand people in Canada will be diagnosed this year and the same number will die. We need research to change this reality. The ALS Ice Bucket Challenge may help to change the future.”
Canada, consider yourself Challenged.

The public can donate to ALS Societies across Canada at alsicebucketchallenge.ca.

$17 million was raised through the ALS Ice Bucket Challenge in 2014.

ALS Research:

• $11.5 million went to ALS research from ALS Societies across Canada
• We have seen a 70% INCREASE in grant applications through the ALS Canada Research Program
• By October 2015 $12.9 MILLION to be invested in research grants and programs

Client services:

• $4.4 million went to client services across Canada
• Each provincial society directly supports clients living with ALS in their communities

Processing fees

• 6% to administer the ALS Ice Bucket Challenge

Increased awareness of ALS through the ALS Ice Bucket Challenge resulted in:

• $10 million matching grant for research by Brain Canada
• April 21, 2015, the Government of Canada announced that the compassionate care benefit (CCB) may be  extended from six to 26 weeks. It was announced in the budget for an anticipated implementation in 2016.  If the Government of Canada implements the extension, caregivers may have up to $13,624 they can access, where previously it was $3,144.