My name is Sam Najjar and I have personally experienced the impact of ALS. Fourteen years ago, my father was diagnosed with ALS, and our lives were changed forever. Watching him face this disease was incredibly hard, but his strength and resilience have inspired me to join this fight.
Let me tell you more about this offer, and why it makes our community stronger.
A generous board member from ALS Canada has offered to match your monthly donation for the first three months! This means your gift will have double the impact, reaching more families, and funding crucial programs and support like:
Community and virtual programming, including new wellness workshops that are open to anyone across the country.
Online support groups that provide comfort and connection.
The ALS Canada Canadian ALS Learning Institute (CALI), where people can learn about ALS research and advocacy in a supportive environment.
ALS Canada does not receive government funding making them 100% donor-funded. That means every bit of support is only possible because of donors like us. Believe me when I say, this kind of support helps people like my father every single day.
So, let’s unite in our kindness and support for one another. Together, we will work toward a world free of ALS. As a thank you for your monthly donation, ALS Canada will send you a special free “United in ALS” tote bag.
Thank you for being part of our mission with us. Your support means the world to people and families affected by ALS. My father’s memory lives in every monthly donation I make. I know he would be proud of its impact, funding critical research, advocacy, and community support that will lead to a world free of ALS. All you have to do to join me is use this link and make a monthly commitment right now!
United in ALS,
Sam Najjar
Mutiat and Idris met on a street in Lagos, Nigeria 21 years ago and became fast friends. Their friendship was kindled for almost a decade before they realized they were in love and wanted to build a life together. “She makes me a better person,” says Idris. “She motivated me to go back to school. She’s my best friend.”
The couple were married in 2009 on Idris’ birthday, after which they moved to the United States and had three children. Some time after her last birth, Mutiat started to experience weakness in her muscles. Later the next year, she began having slurred speech and uncontrollable laughing. In January 2018, after a fall at the US-Canada border that caused her to be rushed to the emergency room, Mutiat, at the age of only 36, was diagnosed with ALS.
Her diagnosis hit the family hard. They now live in Ontario, and as her disease has progressed, Mutiat has found she has not been able to care for her children the way she had envisioned. Idris has become the family’s primary caregiver and he worries about the future. He’s thankful for the support from the ALS community and says if not for its assistance, life would be considerably harder than it already is for the family of five.
“As an unemployed individual, if we did not have ALS Canada’s support in terms of equipment for my wife, life would be miserable,” Idris says. “ALS Canada really comforted us majorly by providing useful equipment for my wife’s everyday routine activities and also this equipment lessens my daily worries and burden.”
For Mutiat, the warmth of the people around her, as well as the accessibility to the ALS Canada Equipment Program, have helped her tremendously. “I can never forget the warmth and support from my Community Lead, Joanna, toward my family, especially the connection she has made with our daughter. My husband and three kids are my everyday joy and they are very crucial to my ALS journey. They are my pillars and the strengths of my wellbeing; without them I don’t know what would have happened to me since my diagnosis.”
Mutiat studied marketing in university and was a businesswoman prior to her diagnosis. “Regrettably after the ALS diagnosis I lost focus in all my passions,” she says. “My present condition has been progressing and debilitating my passions in many levels of my life. At only 39 years of age, my life has already been dramatically shortened.”
She draws strength from her husband and children, as well as from religion – she faithfully reads the Quran – and from words of comfort from family back home in Nigeria. Idris helps her by saying soft words at the beginning of every day, with mouth care and positioning in bed, as well as bathing, food preparation and helping Mutiat to move around.
For Idris and Mutiat, the time is now for love, hope and kindness. Even as they face immeasurable hardships, Mutiat and Idris rely on love to carry them through the adversity they encounter on a daily basis. “Anyone who lives with ALS needs love, needs caring,” says Mutiat’s husband, Idris. “I love her…I’m here for her, every day.” Despite Mutiat’s ALS diagnosis and how quickly the disease has impacted her ability to speak and move, Idris says Mutiat reminds him to focus on the things they have to be grateful for, in particular their three children. “They’ve taught me a lot about love, about caring, about the blessing of life,” Idris says.
Advocacy and funding for research and community-based support services are things that were important to Susheela. She was featured in ALS Canada’s eAdvocacy campaign this year which launched during ALS Awareness Month in June, and she’s also featured in our end of year holiday giving campaign. We recently learned that Susheela passed away from ALS in late November. With encouragement and permission from Susheela’s family, we continue to share her experience and passion for the cause. Our thoughts are with those who love and cared for her.
Susheela Balasingham first noticed signs that something was off when she felt weakness in her left hand and was unable to hold on to a piece of paper. Hard patches on the soles of her feet made her uncomfortable and unstable. She had fallen a few times due to balance issues and instability, and for these reasons her family doctor referred her to a physiotherapist, who then advised her to see a neurologist.
In October 2020, the year she turned 71, Susheela was diagnosed with ALS. She and her husband didn’t know what ALS was then, but once her family started researching it, they were shocked to know how it was going to affect her life. She was devastated and in denial for months before the acceptance started to set in.
“My husband and family gave me the support by constantly reminding me that everything will be okay. Since we didn’t know how the progression was going to affect me and my husband’s lives, as he is the sole caregiver, we both took things one day at a time and improvised on solutions to make it comfortable for me,” Susheela said.
An extremely active individual prior to her diagnosis, she worked at an investment services company for 16 years as a quality control officer. She also volunteered at the Senior Tamils’ Centre of Ontario, holding the position of director and assistant secretary on the board, from 2014 up until shortly before her diagnosis.
“I spent a lot of time with my grandchildren in the US and they would often come and visit me and my husband,” she said. “I took part in a lot of their extracurricular activities. I also was a good baker and jewelry designer. I used to make a lot of birthday cakes and jewellery for family, friends and different events.”
About one and half years after receiving her diagnosis, Susheela lost the ability to use her arms, hands, legs and voice. At that point, she was able to communicate with the help of eye-gaze technology, for which she was thankful. The device was one of the things that ALS Canada helped her to secure and her Community Lead was committed to helping her navigate our healthcare system to obtain support that is publicly available.
“ALS Canada has helped me equip my living space with the appropriate equipment and tools that have tremendously helped my husband in supporting me. They have helped me with agency by connecting me with programs that provide personal support worker hours. Most of all, they have been a great sounding board and provide coaching for situations that my husband and I have come up against,” she said.
Susheela was no stranger to adversity, having lived through a civil war in her native country of Sri Lanka, which she left for Canada 30 years ago. “There were many obstacles and stresses that I faced early in my married life due to the civil war in my birth country, that taught me to appreciate life and to see the positive in any outcome,” she said. “These experiences have also led me to find solutions and make peace with whatever comes my way.”
In difficult times, most people have coping methods to help them along the way. For Susheela, her loving and caring husband gave her support and strength to cope with ALS. “He is an engineer by profession and very practical in dealing with anything in life. His wisdom carries me through the day. My children and extended family are also very supportive in being there emotionally and physically as needed. Every day there will be someone to talk to me. I am grateful and blessed to have all the support I have,” she said.
“The earlier we [people living with ALS] have access to approved therapies, the higher the chances we have to slow the progression of the disease and maintain quality of life,” Susheela said. “As someone who has lost most of her motor functions a year and a half after diagnosis, I do wish that I could have accessed approved therapies that may have helped me keep some of my mobility for longer.”
Earlier this year, Susheela was one of the featured ALS community members in ALS Canada’s advocacy campaign during June’s ALS Awareness Month. She was the face of ALS Canada’s “The Time is Now” position paper, an urgent call for expedited and equitable access to ALS therapies. The campaign was focused on rallying the community to tell elected officials about the importance of policy changes that ensure equitable, accessible and timely access to Health Canada approved therapies for people living with ALS – and to date more than 6,700 Canadians have taken action.
Susheela felt strongly about participating in advocacy efforts because it was important for her to help increase awareness for the disease. The time is now to support the discovery of new treatments, and to help families and people living with ALS like her to have access to community-based supports.
Steve Daly loved to belt out a tune for family and friends. The 50-year-old husband and father of four is known for his extroverted personality and, before being diagnosed with ALS, enjoyed playing hockey, riding road bikes with friends, cooking for his family, taking his kids to their sporting events and generally being busy and constantly on the move.
That all changed when Steve discovered he could not project his voice in the same way as he could in the past. “I am known to be loud and suddenly, I couldn’t quite get the same volume. I especially noticed it when I tried to sing,” he says. He also felt his breathing was strained when he worked out and found that he couldn’t control his emotions very well. “Something as simple as the Leafs winning a close game would give me tears. My wife chalked it up to aging, but I felt in my gut that something was up. That said, I never thought it would be something like ALS.”
A friend who was a doctor was concerned about Steve’s list of symptoms, so he referred him to a neurologist, who conducted several tests. “I was diagnosed fairly quickly; I know this is not the norm and I am forever grateful to my friend for helping me navigate the process,” Steve says.
Steve owns a paediatric therapy clinic that helps children living with autism, developmental delays and mental health concerns. He was eager and ambitious to open more clinics and was focused on expansion before being diagnosed. (He’s proud to be opening one new clinic in Oakville early next year.) In addition to work, Steve was playing hockey on Monday nights and going on long rides with his friends on his road bike. He coached his four kids to play hockey and they were always at Centennial Park in Toronto where Steve took them for track practice and cross-country running. He and his wife, Cory, took their children on great vacations, something that Steve misses now that travel is not as easy.
“When I was diagnosed with ALS, it was like whammo, everything changed. I was slurring, I had trouble breathing and my muscles started to be taken from me. Talking was always my most marked characteristic, it is how I think things through, get work done, connect with people. That has now been taken from me and I find it very hard to navigate things without my voice. I was a social animal and always out with friends, but I can no longer do that and for me, that is really the worst part,” Steve says.
Steve leans on his wife Cory and their kids for their companionship and their caregiving. Cory and Steve have a great love story. They met in university but didn’t start dating until years later. They had the same large group of friends and their wedding was a blast because of that. “We have a very joyous marriage and really approach life with a desire to make the most of it,” says Cory, a counselling therapist who works with children.
Cory’s mother passed away from cancer when she was 22 years old, and she stepped into a bigger role for her younger siblings. “I learned a lot from that experience, namely that life can be short and so it is best to enjoy every moment,” says Cory, who likens Steve’s prognosis and path with ALS to an existential challenge. “In my work as a counsellor, I often try to help clients embrace the cliche, ‘one day at a time’; I find now, that I need to take my own advice,” she says.
Cory finds that the things Steve needs help with continue to change from one week to another. “At first, it was emotional support and solidarity. I also felt a big part of my job was helping our kids navigate the news. The next big thing was Steve losing his speech; while he still has a voice, but has to strain to use it, his words are hard to understand and so he uses technology. In larger groups, he looks to me to help fill in gaps,” Cory says.
For Steve and Cory, knowing that help is available is a relief. “Steve uses a BiPAP and a cough machine and ALS Canada helped to coordinate this equipment,” Cory says. “We are in the early stages of the disease, and so haven’t needed much yet, but it is a comfort to know they are there as things continue to progress. Meeting Sarah, our Community Lead, was a very warm support to know there are resources to help as things move forward.”
Steve echoes that sentiment. “People at ALS Canada make you feel a part of something, and they offer support and groups of people looking to get past these challenges. David Taylor, the organization’s VP Research, has given me a lot and for that I’m eternally grateful. And I enjoyed meeting Sarah; she is a great resource for all types of help.”
ALS dwarfs any challenge he’s faced in life, but Steve says he’ll never give up hope and encourages others who have received an ALS diagnosis to hold on to hope as well. “While I don’t hope that the disease will disappear (as that feels untrue), I hope for good days and quality moments with my friends and family and that I enjoy the time I have. I think it is important to know that you are always living until you die, whenever that may be, so keep going and keep doing what makes you happy. Never give that up. I haven’t and that’s what keeps me going.”
Steve’s family knows that time isn’t endless – that the family grapples with ALS makes time seem more valuable, in shorter supply. For the Daly family, the time for hope and more precious moments with loved ones is now.
For Taya Jones, a single mother of three, there has been one silver lining during COVID-19, and that has been making memories with her children in the evenings, after work and school. “We’ve been isolated together for more than a year, and it’s been probably the best year of my life because of that. ALS can’t take away my memories,” she says.
Taya was diagnosed with ALS in 2018, something she was totally unprepared for having been an athlete all her life. “I thought, ‘oh my God, my kids, what am I going to do?’ I’ve done Ironman triathlons – I ran marathons and was a figure skater as a kid. To take away my physical skills was too much.” Today, every time she sees someone put their hair in a ponytail, she thinks, “what I wouldn’t give to be able to do that again.”
“I need to help build my children’s resilience as much as I can right now, because my kids are going to be without me one day – that’s the reality,” Taya says. “ALS can take away my physical capabilities, but it doesn’t take my joy – it cannot take my love, it doesn’t take my intelligence. It hasn’t taken my smile yet, but it can. Even when it does, my smile will go inside. It’s about learning to let go of what you can’t control.”
Taya and her kids, who are also her caregivers, are all in for Lou Gehrig Day. They are all ardent Blue Jays fans and look forward to June 2 – a day that will mean so much to them as a family living with ALS.
While there are two approved ALS therapies in Canada, Taya doesn’t consider either to be a treatment. “We all know that the same thing that happened to Lou Gehrig 80 years ago still happens today – there’s no treatment for someone who’s diagnosed with ALS,” Taya says. “Hopefully the awareness around Lou Gehrig Day brings on some funding for research towards a treatment. This is going to be something that happens every year now. I think we’re going to be able to maximize this, especially after the Jays come back to Toronto.”
Taya has been a Jays fan all her life, since her childhood playing t-ball in Nobleton, Ontario. In 1993, she happened to be near the third base line at the World Series Jays game where Joe Carter hit the winning home run. “I was far enough that you couldn’t see if it was a fair or foul ball, but the entire place just lit up. I felt grateful to be part of something so incredible,” Taya says.
When she was a recreation therapist at CAMH, Taya and her friend, who worked a floor above her, would take patients to Jays games. Today, the two friends both have ALS, a devastating disease that targets the motor neurons in the brain and takes away voluntary muscle function.
“I’d love to see the Jays donate a certain amount of money to ALS research for every strikeout that happens in the game on Lou Gehrig Day, or maybe fundraise from one of the jerseys they might have,” she says. “The Jays could have a team in our Walk to End ALS – that would be tremendous if we could align. But at the very least, it’s important to talk about Lou Gehrig, what happened to him and that the time is now to strike out ALS.”
Mark Kirton faces ALS with the mindset of a pro athlete. He played in the National Hockey League from 1978 to 1988 for Toronto, Detroit and Vancouver and then followed that up with a successful career in real estate in Oakville, which he still runs from home. In the spring of 2015, Mark started feeling muscles in his right bicep twitch, and he was getting weaker. Then other things started happening – he would fall randomly or drop a dumbbell that wasn’t particularly heavy. “The disease moved around like a clock – going from right arm to left arm, to left leg to right leg, and it caused a lot of damage along the way,” he says.
For Mark, who received his ALS diagnosis in 2018, the progression of the disease has been humbling and cruel. “It’s almost like when you’re trying to make it to the National Hockey League and you’re so disciplined and so driven – nothing is going to stop you. That’s the attitude I had to take – that nothing would stop me from keeping with my same personality. I won’t allow depression to seep in.”
After he got the devastating news, Mark listed as many current and former pro-athletes he could think of who have or had ALS and came up with 80 names in an hour. He’s reached out to some to talk about their shared experience. “What really is amazing about all of these ALS inflicted people is that they are so positive, it’s like they have hearts of lions,” he says. “I try and talk to some that reach out to me to try and boost them up and give them some positivity, but there’s a lot more I’d like to get a hold of in this journey.”
ALS has had a profound effect on Mark’s family, who are also his caregivers. He will never forget the look on his 15-year-old daughter and his wife’s faces when he took a fall in February trying to shut off the TV. “It’s a helpless look,” Mark says. “Here’s a former NHL player who used to have the strongest legs in the world. … I try not to, but you can’t help but letting thoughts jump into your head like, ‘I want to be around when my daughter gets married.’ You start thinking about the future like that, but you’ve got to catch yourself and think about today. ALS doesn’t just affect me, it affects my wife and kids too, so I have to make sure that I’m very upbeat so everyone else is okay around me.”
“From a positive standpoint, never ever have we been in a position we’re in right now to push forward with awareness,” Mark says. “I think Lou Gehrig Day is massive. MLB came out with a mandate to raise awareness and funds for research, provide some information about the history of Lou Gehrig and ALS and celebrate the groups and individuals who are pursuing cures. Those are some pretty strong mandates.”
In addition to Lou Gehrig, there have been a number of prominent professional athletes who have developed ALS. Some of these athletes include: Jim “Catfish” Hunter (MLB 1965-79), Tony Proudfoot (CFL 1971-82), Chris McCauley (OHL 1979-83), O.J. Brigance (CFL and NFL 1991-2002), Steve Gleason (NFL 2000-06), Pete Frates (Baseball: Boston College Eagles, 2004-07), and Steve McMichael (NHL: Chicago Bears: 1981-1993). While the causes of ALS are unknown, researchers have been studying whether high-intensity sports might be a potential risk factor for ALS.
“It’s unprecedented times right now,” Mark says of the opportunity to raise awareness with Lou Gehrig Day. “I think NFL football should be next – because they have numerous guys that have or had this horrific disease. They should be next in line to also have a Lou Gehrig Day – why not? – celebrate it one Sunday during their season. I think all of the sports leagues that have former athletes that have ALS should be involved in this, until we have a cure. … ALS has been kind of a forgotten illness. I think with MLB’s awareness activities on June 2, and the community’s participation in Walk to End ALS events in Ontario on June 20th, let’s hope that some of the other leagues take notice and do something.”
Share your baseball connnection
Use social media to share your baseball connection and what Lou Gehrig Day means to you. Use the hashtag #StrikeOutALS and tag @ALSCanada and your provincial ALS Society.
Baseball has always been a special part of the Cels family. Mike Cels played the sport through high school, switching to slow pitch as an adult and playing it at a competitive level for most of his adult life. After he was diagnosed with ALS in 2017, he and his wife Carmen checked off a bucket list item when they traveled to Dunedin, Florida for the Blue Jays’ spring training. Their children played t-ball when they were younger and have been to many Jays games with their parents, who are both avid fans.
“The Jays were the one team we could all agree upon,” Mike says. “We formed family memories such as son Jonathan losing a tooth at a game. Or the time our daughter Cynthia got to be on the field and up on the jumbotron singing the national anthem with classmates. From souvenir jerseys to hats, scarves, banners, pennants and foam fingers we can be easily spotted as eager fans.”
Since Mike’s diagnosis, the family has gone to see the Jays at the Rogers Centre in 2018 and 2019 from the Sightlines restaurant so that he could still access the game while using his wheelchair and walker.
When they heard that the Major League Baseball community was rallying together for Lou Gehrig day this year, the Cels were excited. “As someone living with ALS, I am glad to see Major League Baseball take on this cause recognizing that since his passing in 1941, Lou Gehrig has been permanently associated with the disease,” Mike says. “As a result Major League Baseball is uniquely positioned to raise awareness of ALS and the fact that it can affect almost anyone at any time.”
“I would also like the broader community to understand that since Lou Gehrig’s death we still don’t know what causes the illness – that there is still no cure and very little in the way of treatment. At the same time there is great promise and excitement in research, so we need their support to keep the momentum going and one day bring an end to ALS.”
With the pandemic, there haven’t been opportunities to take in a game at the Rogers Centre, but the Cels look forward to when they can see the Jays in action. At least once a year they have seen a game in person, whether for celebrating birthdays and Father’s Days, or as a fun activity with out-of-town visitors.
“For us, the Blue Jays and going to a game brings a little bit of joy to our day, and anything I can do to get Mike out there and experiencing something other than the day-to-day is something we would definitely look forward to,” Carmen says.
For Carmen, Lou Gehrig Day is about shining a light on the realities of ALS. “I had always assumed there was some kind of relationship between MLB and ALS patients, and I’m glad there is something formal,” she says. “It means bringing more awareness to ALS – it could mean much more education about the devastating impact of the illness, and therefore how it would impact families and caregivers – helping to open the window as to what living with ALS looks like.”
“We hope the MLB and the Blue Jays in particular would consider making this an annual cause – that they would consider making donations and raising awareness on the day and increasing accessibility and access to the games and maybe the players, to make those games very special,” she says. “I think that would be great for Major League Baseball and for ALS across Canada and the United States.”
Share your baseball connnection
Use social media to share your baseball connection and what Lou Gehrig Day means to you. Use the hashtag #StrikeOutALS and tag @ALSCanada and your provincial ALS Society.
Norman MacIsaac says he’s the “luckiest of the unlucky.” His legs, arms and hands are failing him, his voice is weak, and his speech is slow and laboured, but he refuses to let ALS stifle his positivity. Norm has been on “voice rest” all day, so when we reach him by phone at his home in Montreal, he is rested and ready to talk about how he chooses to live with his disease.
Norm was diagnosed with ALS in December 2014 at the age of 51. He says ALS has given him more clarity about what’s important in life. “I focus on appreciating what I have – parts of my body that still function, equipment that improves my quality of life such as a motorized wheelchair or special utensils that help me eat by myself.”
In addition to a keen sense of humour, Norm has a “secret weapon” that helps him reframe the challenges he faces. A long career working in marginalized communities throughout Asia, Africa, and Latin America has helped him re-evaluate his own misfortune.
One poignant memory Norm shares is the story of two young women he met in India just weeks before their untimely death. Both were victims of child trafficking. Both were placed in isolation because they had contracted tuberculosis. Given that they had contracted AIDS, they were unable to fight their disease. Norm was reminded of their story when he was precluded from participating in an ALS clinical trial due to latent tuberculosis he had acquired abroad. He was frustrated and disappointed, but he was able to appreciate having access to antibiotics to cure his tuberculosis. He also felt blessed to have the continued support of his wife, Christine, and his three kids.
Norm recently published a book about his experience with ALS. He hopes to provide comfort and inspiration to others. “Sometimes, I’ve felt like I’m the only person with ALS who dares to say I love my life,” he says, “but I’ve seen in the Facebook group I created, Focusing on the Positive: Living with ALS/MND, that there are countless people with ALS who want exactly what I want. We are boosting each other. Sharing our stories makes us stronger as a community and more resilient so we can live life to the fullest.”
Despite his positive outlook, Norm openly acknowledges the dark side of ALS. He wants to dispel the myth that being positive means shying away from talking about the physical struggles, the grief, and the psychological toll of his disease. “If we don’t address the negative, we create more underlying stresses that adversely affect our physical and mental wellbeing,” explains Norm. “It builds up like a pressure cooker. We each have to find our own safety valve to release that stress. At the same time, we need to understand and make sense of our new reality and we have to do it without falling in the trap of self-pity and casting ourselves as victims.”
Allowing himself to be vulnerable in the face of fear and shame and sadness was something new. Norm has a condition related to his ALS called pseudobulbar affect (PBA) that causes awkward bursts of laughter and crying. He jokes about being “crying impaired” before having ALS, and appreciates the cathartic effect of being able to release his emotions.
Norm has dealt with negative feelings head-on by reaching into his “toolbox of life experiences,” both positive and negative. For example, recognizing and undoing the habit of avoiding conflict—stemming from his childhood reaction to domestic violence—was one tool that helped him confront his fears after his ALS diagnosis.
Norm MacIsaac sees the best in the worst without dismissing or minimizing the devastating effects of ALS. He brings light into the world with his grace and humanity by continuing to find moments of joy amidst the constant struggle of adapting to his symptoms. That quality is something worth sharing!
You can meet Norm in person at his upcoming book launches:
6 pm on Tuesday, March 3, 2020 in Ottawa at Chapters Rideau, 47 Rideau Street
7 pm on Thursday, March 5, 2020 in Toronto at Type Books, 2887 Dundas Street West
Kyla and Vaughn visited their Great Uncle Murray in Thunder Bay a couple summers ago, making the trip all the way from Colorado. It was their first time meeting someone with ALS, and they were both affected deeply by the experience – choosing to write about it for school assignments later that year. Thank you to Kyla (now aged 10), Vaughn (now aged 12), and family for the opportunity to share what they learned about the realities of living with ALS. Their initiative and compassion inspires hope and optimism for the next generation and a future without ALS.
Kyla’s Story: Heartland Hero
My Heartland Hero is my Great Uncle Murray. He is my hero because he has ALS and is still fighting it. ALS is an abbreviation for Amyotrophic Lateral Sclerosis. ALS is a type of motor neuron disease. It refers to a group of progressive, neurological disease that causes dysfunction in the nerves that control muscle movement. ALS is the most common type of motor neuron disease (MND). It is sometimes called the Lou Gehrig’s disease, after the famous baseball player who had the condition.The 2014 Ice Bucket Challenge aimed to raise awareness and funds for research of ALS. There is not a cure but many people are hoping that the medical community will find one soon.
Murray shows great perseverance. The meaning of perseverance is, sticking with something even though it is hard. One example of how he does that, is when he talks to people it takes a lot of effort for him. He has to pause to take short breaths out of the long tubes that provide oxygen for his lungs. He has to use a microphone to amplify his voice since the loudest he can talk is in a whisper. One more example of how he shows perseverance, is he continues to connect with people by email and handwritten notes/letters. Since he can’t use his hands, he has a friend write what he says to create a handwritten letter and he uses voice typing for emails.
Murray demonstrates a positive attitude. The only movement Murray can do is move his head a little bit to the left and right but mostly has it forward. This means that he has to really or allow other people to do everything (roll over, sit up, eat, change clothes, ect). He always has a positive attitude because even though he lives in the hospital he doesn’t let that affect him. He also has a positive attitude because he wants to help others who have the disease. He understands that the medical community will not find a cure while he is living, but he participates in the Walk To End ALS which is the largest volunteer led fundraiser for ALS in Canada. Statistically, 2 out of 100,000 people in the US get the disease yearly. That means if you filled every seat in Coors field, only one person would have ALS.
Murray is an inspiration to me because he keeps fighting to live. Murray has lived with ALS for almost 5 years. He was diagnosed in December 2013. Most people live between 2 to 5 years after diagnosis. Before Murray had ALS he had a normal/typical life. He had a job as a policeman and raised two sons. He inspires me to be grateful because I can walk and move where Murray cannot do anything by himself. I realize that I shouldn’t complain about things taking a little time or effort when I realize those things would be impossible for Murray. It makes me think on how I can learn new skills and get stronger while he only gets weaker. I learned that Murray does not let his disability define him. Now, when I see other people in wheelchairs, I know not to judge a book by it’s cover!
Today, we know that ALS is incurable. This is why my Great Uncle Murray is a hero to me. I want to be like him by always having a positive attitude and perseverance. Meeting and learning about him, has inspired me and changed me for the better.
Vauhgn’s Story: Visit to Uncle Murray
Last summer, we took a family trip to Thunder Bay, Ontario, Canada, where my dad grew up with his older brother and parents. There are only 102,000 people in Thunder Bay, which is only enough to fill one and a half NFL football stadiums! It is interesting to note that the goalie for the NHL hockey team the Pittsburgh Penguins is from Thunder Bay, and brought the Stanley Cup to his hometown!
While we were on our trip, our family took a few hours to visit my Great Uncle Murray. We walked into St. Joseph’s Hospital, one of the only hospitals in Thunder Bay. As we walked through the doors, I got a blast of warm air in my face from an air vent in the ceiling that smelled like sterile needles and gauze pads. We took up an elevator to one of the top floors where Murray lived permanently. We waited in line for a while, as my great uncle seemed very popular in the hospital. Once it was our turn, I took a deep breath and stepped into the hospital room. There he was, my great uncle I never knew I even had, in a dark white hospital cot, taking breaths of oxygen out of a tube every few seconds.
My mom, sister and I hung back to let my dad and grandparents greet him and talk to him quietly for a few minutes. When they were done, Murray seemed to notice that we were around the door. My dad noticed this too, and with a little nod of his head to me, he called us three farther into the room.
“Hi!” Murray said brightly. “And who might you be?” he asked us politely.
My dad could tell we were a bit shy, so he helped us out again and said, “This is my wife Julie, my daughter Kyla, and my son Vaughn.”
“It’s great to meet you all!” Murray replied.
“You too,” I replied, a bit uncertainly, as I had never met this nice man before. This was the first time I had talked to Murray, and my voice was higher than usual and I was a bit scared because Murray looked intimidating, even in a hospital bed living with a disease called ALS.
ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. A-myo-trophic comes from the Greek Language. “A” means no. “Myo” refers to muscle, and “Trophic” means nourishment. “No muscle Nourishment.” When a muscle has no nourishment, it starts to disintegrate. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening (sclerosis) in the region.
We talked for a bit longer with Murray about his life with ALS in Thunder Bay. He asked me how school was going and what sports I played and things like that. It was very sad to see Murray in this position. It was sad to know that Murray will be in the hospital until he passes away. His disease requires all the help that he can get in the hospital. It is distressing that Thunder Bay doesn’t have a plan or place for young people with ALS to live, instead they live in nursing homes or hospitals. Murray looked a bit like my dad and grandfather, with a balding head and deep brown eyes. When it was time to go, we all said our goodbyes and I told him I really hoped to see him again soon.
We all took a picture together, and it was a very emotional time for us, especially me. We left the hospital and drove back to my grandparents’ house, which was where we were staying for the week. My whole family was very happy to meet Murray; my dad to see him again. I think it was a great experience for my entire family, because I was able to learn about people with ALS and what a struggle it is to live when you have that kind of harrowing disease.
Richard Ellis and Dr. Heather Durham are two people who have each been affected by the realities of ALS, but in very different ways. Having witnessed the physical and emotional tolls of the disease, Richard and Heather each decided to leave a gift to ALS Canada in their wills — gifts that will bring hope to people and families living with ALS today and in the future.
Richard Ellis
Richard’s connection to ALS started on the first day of high school when he met his best friend, Cathy Payne. According to Richard, Cathy’s beautiful spirit and desire to squeeze the most joy out of every experience fueled their adolescent adventures and misadventures, as well as long, thoughtful discussions. Throughout university and the early years of their careers, Richard and Cathy remained friends, right up until Cathy passed away from ALS at the age of 40.
“News of her diagnosis came as a complete shock,” says Richard. “I had no idea ALS could affect somebody so young. It was hard to comprehend how her journey would unfold, how she felt and would cope over time, or how I could help.”
Richard committed himself to supporting Cathy and her family throughout her ALS journey, participating in fundraising efforts, lending a hand when needed, listening intently, and spending as much time as he could with his best friend.
“It was both a beautiful and heartbreaking time in my life that I will never forget,” he recalls. “So the decision to include a bequest in my will to ALS Canada was easy to make.”
Dr. Heather Durham
Like most people, Dr. Heather Durham, researcher and professor at McGill University, never expected to be touched by ALS. In fact, her connection to the disease came indirectly and unexpectedly through a patient she met as a young investigator at the Montreal Neurological Institute and Hospital.
“It was a pivotal moment in my career, and I remember it like it was yesterday,” she says. “From that point, I would focus my research on ALS.”
While this realization came more than 30 years ago, Dr. Durham’s quest to find answers and develop effective treatments has continued to grow year after year.
“I have tremendous confidence in the ability of ALS Canada to advance ALS research, to invest donor dollars wisely, and to create a better future for everyone affected by this devastating disease.”
Heather decided to include a contribution to ALS Canada in her will to ensure that her work continues long after she hangs up her lab coat. Today, Dr. Durham serves on the ALS Canada Board of Directors as well as the organization’s Scientific and Medical Advisory Council.
In Canada, May is “leave a legacy” month, which encourages people like Richard and Heather to make a donation through their will or another planned giving vehicle to a charity or cause that is meaningful to them. A planned gift to ALS Canada is a way to extend your compassion to people and families who will face an ALS diagnosis in the future, and to demonstrate your shared hope for a future without ALS.
We are committed to working with you, your family and your financial advisor to ensure your philanthropic and financial goals are met. If you have questions about making a donation to ALS Canada in your will, please contact donations@als.ca or 1-800-267-4257.
Like many young people, 22-year-old Eddy Lefrançois had carefully mapped out his future and had a vision of how his life would be. Then, on April 14, 1992, his doctor delivered the news that Eddy had ALS. That day and that news changed his life forever – but not in the way you might expect.
Being unfamiliar with the disease, Eddy was shocked to discover that there were no effective treatments for ALS, and that the diagnosis brought with it a life expectancy of only three to five years.
“At the beginning I was mostly focusing on what the disease was taking from me,” he says — including his ability to move his arms and legs, and to speak. But as time went on, his perspective changed. He now refuses to allow his ALS to determine how he will live the rest of his life.
“I focus my energy on what the disease has given me,” says Eddy. “All the opportunities that have been offered to me, things that would not have happened and people I would not have met.”
Five years after his diagnosis, Eddy had out-lived the prognosis he was given. Little did he know that his journey had just begun. Years later, he travelled to Las Vegas and got a tattoo reading “EXP: 04.97” to indicate that he had surpassed his own “expiry” date.
While fewer than five percent of people diagnosed with ALS will live for 20 years or more, Eddy has now been living with ALS for 25 years. And his tattoo still provides him with motivation. He says that each time he looks at the numbers, “I am reminded that I am fortunate to still be alive and to keep at it for every single person and family who fought and are fighting ALS.”
Eddy has been particularly inspired by the phrase “Let’s Roll” as exclaimed by Todd Beamer, a passenger aboard one of the ill-fated 9/11 flights. Along with a small group of fellow passengers, Mr. Beamer had decided he would not go down without a fight. For Eddy, the phrase is an iconic statement of resiliency and one he has adapted for his own use. “Let’s Roll Out ALS” has become his personal mission and tagline. As an ALS Canada Ambassador, he spends much of his time and energy raising awareness and funds for ALS research and support, including an online store that sells “Let’s Roll” keychains and stickers.
To mark his twenty-fifth year living with ALS, Eddy is travelling to Toronto from his home in Northern Ontario. He and his friends will visit the Hockey Hall of Fame and dine at the 360 Restaurant in the CN Tower. In addition, he has set a goal to raise $25,000 by June, which is ALS Awareness Month. The campaign goal reflects each of the twenty-five years he has been living with the disease.
Despite all of the challenges that living with ALS presents, Eddy says he would not change the last 25 years for the unknown. When others ask for his advice on how to navigate the disease, Eddy replies: “I take in consideration medical advice, but I do what feels right to me and brings me joy. I used to believe when you have good health you have everything. Now I know that when you are loved, you have everything. Let’s Roll Out ALS together!”
Jonathan Corber is an ALS Canada Ambassador. After his mother, Wendy, was diagnosed with ALS in February 2016, Jonathan became one of her primary caregivers and stayed in this role through to the end of her journey. Jonathan took some time to connect with us recently to share his experience as his mother’s caregiver for National Family Caregiver Day. Thank you, Jonathan, for sharing your experience as a caregiver with the ALS Canada community.
Could you tell us about your mom, Wendy?
She was the most selfless person I knew, always putting others ahead of herself – her family, her friends, and her clients. Whenever you went to her for advice, she would be happy to share her opinion and help you deal with the situation. She also worked full-time as a Care Coordinator on the Palliative Team at a Community Care Access Centre, and so she had patients who were living with ALS. Her patients would call in the evenings, mornings, weekends, and she would always be happy to answer the call. Although she had been experiencing symptoms for a year and a half, she continued to work until she was officially diagnosed with ALS. Usually she would go visit clients in their home, but after she became sick she would Skype with the doctor and family so that she was involved in the conversation.
What was your relationship with her like?
It was a unique relationship. Even before she got sick I would speak to her numerous times of day, often going to her for advice or just to say hi. It was good to hear her voice. Then when she got sick, if I wasn’t there throughout the day, I would be touching base probably within the hour or every two hours to make sure she was comfortable.
What were some of the responsibilities of being your mother’s caregiver?
I was one of her main caregivers along with my wife and father. I would dress and feed her, assist with her bedtime routine, transfers and toileting. I would also set up and clean her assistive devices, ensure her medication was being taken and that she was comfortable (she would rarely complain). I would also communicate with the physical therapist, occupational therapist and personal support worker, and advocate on her behalf.
How did you balance your role as a family caregiver with other responsibilities and demands of life?
I was able to balance my role as a caregiver by having other people who I felt comfortable with and trusted taking care of my mom. Having my father and wife assist with the daily responsibilities of being a caregiver helped me find balance, as well as having my sisters come in from out of town on a regular basis. I was always thinking of her though, and would call to make sure she was okay when I wasn’t there in person.
What did you find was the most challenging part of being a caregiver?
Balance was the most challenging part of being a caregiver. Everyone needs to find a good balance to care for themselves so they can care for a loved one. I had trouble finding balance and always wanted to be with her to make sure she was getting the proper care.
What did it mean to you to be a caregiver to your mom?
My mom was ALWAYS there for me my entire life, even as she battled the disease. So knowing that I could be there for her and advocate on her behalf gave me satisfaction. It felt good knowing I was able to help improve her quality of life as much as I possibly could.
Do you have any advice or tips to share with other family caregivers?
Be open with one another, whether caregiver to patient or caregiver to caregiver. Also, try to find balance in your own life, because it can take a toll on you and it’s easy to get run down and sick. Then you’re in a position where you can’t take care of anyone else.
How has your experience affected how you approach your role as an ALS Canada Ambassador?
Sharing my mom’s journey makes me feel good and helps with the grieving process. I’m hoping to give other caregivers some insight into how they can improve the quality of life of an ALS patient. My mom always said to be proactive; she was always one step ahead of the game. I want to encourage families to be proactive and advocate for their loved ones. I am excited to be able to be a part of the ALS community. Before my mom passed, I told her that I wanted to support the work of ALS Canada and she was very supportive.
Our hearts are heavy as we say good-bye to Mauril Bélanger, MP for Ottawa-Vanier. Diagnosed with ALS in late 2015, he partnered with the ALS Societies across Canada and took on the role of National Honorary Spokesperson for the 2016 WALK for ALS.
As someone who spent much of his adult life in a role that served the needs of others, it is no surprise that following his diagnosis, Mauril became a committed champion for the ALS community. In the brief time we worked with him, we saw the outpouring of support from his family, friends and colleagues. Even after the disease took away his ability to speak, he used his voice to reiterate the need for research and a cure.
Speaking through a family friend at the WALK for ALS in Ottawa earlier this year, Mauril shared a quote from Scottish author Samuel Smiles: “Hope is like the sun, which, as we journey toward it, casts the shadow of our burden behind us.” Though his journey was cut short by ALS, Mauril faced his diagnosis with grace and strength – and with the hope that research will change the course of the disease for others diagnosed with ALS in the future.
Our thoughts are with his wife, Catherine, and with his family and friends. We are grateful for your support, Mauril… rest in peace.
The ALS Ice Bucket Challenge gave me back the voice that ALS was taking from me. It took my personal struggle and gave it validation and hope. We need to keep going to fund research so that one day ALS will be treatable, not terminal. I accept the passing of the bucket from co-founder Pat Quinn to unite Canadians, and challenge them to take the ALS Ice Bucket Challenge this August and every August until we find a cure.
Brian Parsons • living with ALS | ALS advocate
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.
$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.
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For Mutiat, the warmth of the people around her, as well as the accessibility to the ALS Canada Equipment Program, have helped her tremendously. “I can never forget the warmth and support from my Community Lead, Joanna, toward my family, especially the connection she has made with our daughter. My husband and three kids are my everyday joy and they are very crucial to my ALS journey. They are my pillars and the strengths of my wellbeing; without them I don’t know what would have happened to me since my diagnosis.”
“I spent a lot of time with my grandchildren in the US and they would often come and visit me and my husband,” she said. “I took part in a lot of their extracurricular activities. I also was a good baker and jewelry designer. I used to make a lot of birthday cakes and jewellery for family, friends and different events.”
Steve leans on his wife Cory and their kids for their companionship and their caregiving. Cory and Steve have a great love story. They met in university but didn’t start dating until years later. They had the same large group of friends and their wedding was a blast because of that. “We have a very joyous marriage and really approach life with a desire to make the most of it,” says Cory, a counselling therapist who works with children.
When they heard that the Major League Baseball community was rallying together for Lou Gehrig day this year, the Cels were excited. “As someone living with ALS, I am glad to see Major League Baseball take on this cause recognizing that since his passing in 1941, Lou Gehrig has been permanently associated with the disease,” Mike says. “As a result Major League Baseball is uniquely positioned to raise awareness of ALS and the fact that it can affect almost anyone at any time.”
Norm recently published a book about his experience with ALS. He hopes to provide comfort and inspiration to others. “Sometimes, I’ve felt like I’m the only person with ALS who dares to say I love my life,” he says, “but I’ve seen in the Facebook group I created, Focusing on the Positive: Living with ALS/MND, that there are countless people with ALS who want exactly what I want. We are boosting each other. Sharing our stories makes us stronger as a community and more resilient so we can live life to the fullest.”
While fewer than five percent of people diagnosed with ALS will live for 20 years or more, Eddy has now been living with ALS for 25 years. And his tattoo still provides him with motivation. He says that each time he looks at the numbers, “I am reminded that I am fortunate to still be alive and to keep at it for every single person and family who fought and are fighting ALS.”
