While it is a special time for many, the holiday season can also be especially difficult for people grieving the loss of someone close to them. We know this to be true in the ALS community because so many of us have felt it ourselves.
The truth is that nobody truly chooses to be part of the ALS community. That is chosen for us.
ALS can affect anybody, so our community is very diverse. The one thing we all have in common is the one thing we wish we did not: we know ALS. And to know ALS is to know heartbreak.
Right now, there are many people across Canada experiencing the holiday season for the first time since they lost someone close to them. If you are one of these people, we want to remind you that you are not alone. There is an entire community here who cares about you, and last month, we emailed them with a single question:
Will you help share a heartwarming message with families in the ALS community who may be having a tough holiday season?
Want to hear something incredible? We received HUNDREDS of responses. We have shared a small sampling of them below, but the message in each of the 100+ responses was clear: we are here for you, and you are not alone.
“My message to families in the ALS community this holiday season is to enjoy your moments and memories, celebrate with compassion and care, be mindful and caring of others and hold on to the love you share, it has truly been our strength throughout the illness of ALS and beyond. The holiday season will be hard for us this year, but we will find ways to honour our amazingly strong and courageous husband and dad.”
– Michele, Tristan (24), Leila (18) and Iris (15)
“You are not alone. You are seen and you are loved.”
– Mark R.
“My message to families in the ALS community this holiday season is to not give up hope. My grandmother lost her battle with ALS in 2011 and that has not stopped me from continuing to believe that we will one day live in a world where we can beat this disease.”
– Grace A.
“Grief can feel heavy and dark. Let some light in and allow yourself to feel happiness and joy. Smiling and laughing doesn’t mean you don’t care or don’t miss your loved one. They would want you to be happy.”
– Jennifer A.
“I get it. Over the last few years your traditions may have been thrown out the window. It probably seemed like everyone else was going on with their holiday plans, maybe not even realizing how much yours had changed. You may have spent it visiting the hospital or LTC. You may have felt angry or sad. This year is different, but as you got through the past you have been through the hardest holidays already. I promise! Take it slow, alter your traditions and find small ways to continue. Have the happiest holiday possible and know that you are not alone.”
– Stephanie P.
“…Our loved ones live on in our memory, the purpose of our day-to-day lives and our kindness to others. May you be gentle with yourself and find some peace.”
– Colleen C.
“We love you and are behind you every step of the way. May this holiday season bring some sort of comfort. Let’s have a future without ALS!”
– Meli C.
“You are not alone. Even if it feels that way, remember that there’s an entire community of people across the country who care about you. Be patient with yourself and remember that every one of your feelings are valid.”
– Ralph Z.
“As a person living with ALS, my message to families in the ALS community this holiday season is this: if you have lost a loved one to this disease, I’m convinced that your dearly departed wants you to be happy and spread love to all your family and friends. Cry (yes, it’s good to cry), laugh, sing, eat, drink, and enjoy the holidays!”
– Norman M.
“I can’t say that I know what you are going through everyday but I can promise I will always continue my monthly sponsorship to support you and your families. I pray everyday that you find the strength to keep up the good fight and that a cure will one day be found. Your strength never ceases to amaze me. I hope you try to have a peaceful Christmas and know that there are many of us who share your grief and hope for better days ahead. Bless you all.”
– Shelley P.
“My message to families in the ALS community this holiday season is that although we share our grief, we also cherish memories and keep alive our hope for a cure.”
– Ann M.
On behalf of the entire team here at ALS Canada, thank you for reading these messages. We will continue to share more on social media throughout the next year. Our team wishes you strength and solidarity this holiday season. We are here for you.
My name is Mehboob, and I’d like to share my story with you. And I want to say thank you.
In late 2020, life took an unexpected turn when I was diagnosed with ALS. Once the provider of medical care as a family physician in the community of Stoney Creek, Ontario, I found myself in need of care and support.
ALS, as many of you might know, is a relentless adversary. The speed with which it operates can be overwhelming. But the journey I embarked on has become one not of despair but of hope and inspiration.
I have learned to accept this journey that I am on. This disease is a rare one, and while I still can, I will do everything in my power to raise awareness about what it is like for families like mine and what we are going through. Like the needs we have. The costly aspects of this disease – so much care and equipment are required, which is not cheap. The emotional toll it takes on our partners – like my incredible wife Sophie, who I love with all my heart.
Some of you may remember the ALS Canada Walk to End ALS event earlier this year. I had the honour of leading our team, “Marching for Hope.” Together, we raised close to $15,000 for ALS research, and I pledged to match a part of those funds personally. But the Walk was not just about funds; it was a statement – a statement that despite the odds, we would stay strong, we would press forward, and most importantly, we would hope.
Today, nearly six months later, I reflect upon our journey together. Despite the hurdles – the wheelchair, the physical setbacks, the emotional challenges – there’s been an incredible force of good around Sophie and me. And this force is a daily reminder that there is so much we can still do. Your support, your words of encouragement, and your unwavering belief have been the wind beneath our wings. Thank you for supporting ALS Canada. Thank you for supporting me.
I’ve always believed in the power of community. In my years as a physician, and now, more than ever, as a part of the ALS community, I’ve witnessed what collective compassion and commitment can achieve. Every day, my heart is warmed to know I am not alone – you and the rest of the community are right here with me. Thank you.
It’s not just about fundraising but about creating awareness, providing support, and, most importantly, showing that we’re in this together. Every message, every phone call, every tiny gesture has had a profound impact on me. And it’s these collective efforts that hold the promise of a brighter future for everyone affected by ALS.
So, as we journey forward, remember this: your involvement, commitment, and heart have made a difference. You’ve given me, and countless others, strength and hope.
From the bottom of my heart, thank you.
Warmly,
Mehboob
Diagnosed with ALS in 2020
P.S. Our mission is an ongoing one. While we’ve achieved much, there’s still a road ahead. If my journey resonates with you, and you feel the urge to support further, please consider donating here. Your contribution, no matter how small, changes our world.
ALS Canada highlights the 2023 ALS Canada Kevin Daly Bursary recipients
Following her father’s ALS diagnosis in the summer of 2022, Daniella D’Amici – a 2023 ALS Canada Kevin Daly Bursary recipient – continues to demonstrate her resourcefulness and resilience in the face of adversity. Currently a biomedical engineering student at the University of British Columbia, Daniella always knew she wanted to pursue a career that blended her desire to problem-solve and do good.
Designing medical devices through her studies has taken on a new meaning for Daniella as she experiences the unique needs and challenges of people who require equipment to support their daily lives. “A really big thing I hadn’t thought of before but was aware of is the accessibility of assistive devices. Seeing how my dad interacts with them and how custom-fit is such a priority has brought on a new perspective.”
As she continues her academics with a new connection and hopes for the future of medical equipment and accessibility, she also shoulders the new role of caregiver alongside her mother and sister – navigating the mental impacts an ALS diagnosis can bring. “Being impacted by ALS can feel very isolating,” Daniella says. “Your strength is in your support network. I’ve had trouble asking for help sometimes, but I’ve quickly learned this is something that can’t rest on my shoulders. I would let others in similar situations know how to cherish everything with their families, and as terrible as this is, it will bring you closer together.”
Supporting students by providing a sense of security to ease daily stresses and an opportunity to feel connected with the wider ALS community across Canada is crucial to what the ALS Canada Kevin Daly Bursary seeks to foster. To Daniella, receiving a bursary echoes this sentiment, “Day to day, it can be stressful, so having an external form of security makes a huge difference to me. The additional financial security has been overwhelming and very appreciated. As well as connecting with the ALS Canada team and having them understand what I’m experiencing – that has added a sense of community that has been really special.”
ALS Canada highlights the 2023 ALS Canada Kevin Daly Bursary recipients
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.
Join Margot’s fight to end ALS.
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!”
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.”