Category: Fund Development

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.

On the morning of GivingTuesday, our Vice-President of Fund Development, Chris Pon, sent an email to ALS Canada’s subscribers. His message is so special that we’ve decided to adapt it into a blog post. Plead read Chris’ message below.

Hello all,

I couldn’t sleep much the night before GivingTuesday – too much excitement about the day that would come.

So I sat down at my desk as dawn broke and wrote an email to our community. It’s often in the early morning hours when I reflect on my dad’s life, his passions, and the aching void left behind when ALS took him from us. He may be gone, but I know I can still keep him with me through memories I’ve shared before — of Beach Boys’ melodies echoing down our hallways, the roar of his prized car, “Big Red,” and the love my dad had for every one of us.

Just like the memories I hold dear of my dad, I know you have your reasons to support our cause.

Today, those reasons shine even brighter. Why? Every holiday season, we come together as a community to reflect and share our stories. We know how important this time of year can be, but also how difficult it can be for those of us whose families have been rocked by this devastating disease. For many of us, our families now look different than they used to. And so, our holiday seasons look a little different, too.

We’ve talked about the countless families like mine who’ve had their world changed by ALS, the daily struggle that comes with this relentless disease, and the reality of waking up each day with waves of grief and loss. Today, I urge you to think of these families, your connection to our mission, and how much closer we can get to our goal with your support.

I am the Vice-President of Fund Development at ALS Canada, so I am in a unique position to make this commitment to you: Every time you donate to this organization, I promise you that every penny is immediately put to work. Your generosity, no matter the size, funds:

• Research: Research is complicated and sometimes moves very slowly. Your dollars help us accelerate the pace at which breakthroughs move from the scientist’s bench to the patient’s bedside.
• Life-changing support: Your generosity will absolutely and immediately start helping people living with ALS today, funding support programs and educational resources that make living with ALS a little easier.
• Greatest need: Your donation goes where it’s needed the most, whether essential resources for families or funding for a groundbreaking study.

Every story, every moment, and every memory is a testament to our resolve and everything we can still do despite our aching hearts. And today, we have a tangible opportunity to make a difference.

While I can’t bring back the days of Beach Boys’ harmonies and the carefree rides in “Big Red,” we can move closer to a reality where ALS doesn’t dictate the soundtrack of our lives. I feel like we’re moving the needle, don’t you?

As I wrap up this message, please know that I am incredibly grateful for every single one of you. Let’s seize this moment and, together, make the reality of a world without ALS louder, clearer, and one step closer.

I will be thinking about you and your families this month and sending you my warmest wishes. Thank you again from the deepest corners of my heart.

Warmly,

Chris Pon
Vice-President, Fund Development

ALS Society of Canada

P.S. Please consider making a donation, if you haven’t already. You can do so by clicking here to visit our online donation page.

Mark Vivarais was almost in tears as he walked back to his wife, Sandra, from a washroom at an outdoor outlet mall in Florida. He’d been stuck in there for half an hour, struggling to pull himself up from the low toilet seat.

“That’s when it hit me,” Sandra recalled. “Oh my god, this is starting.”

Three months before that trip, Mark was diagnosed with ALS. The shock of the diagnosis had rippled through his family of three children and five grandchildren. They knew he didn’t have much time before travel would become too difficult, so they all booked another trip.

On that trip, the hazy realities of his future started coming into sharper focus. It was clear that what used to be simple and instinctive movements – sitting down, getting up, walking – would no longer be possible without help.

“We knew at that point that toilets were a problem,” Sandra said. “That’s when we had to start looking at what we needed.”

Mark’s first piece of equipment was a wheelchair borrowed from the hospital. But he and Sandra quickly realized that he’d need a lot more as his ALS progressed. They also realized that almost every piece of equipment came with a high price tag, and there was no way they could afford it all.

But they didn’t have to.

Sandra reached out to ALS Canada for information and support, and received a home visit from Lianne Johnston, a local Regional Manager. Lianne told Sandra and Mark about the ALS Canada Equipment Program, which loans basic and essential equipment to people and families living with ALS for as long as they need it. Sandra calls it “the cupboard”.

Mark’s occupational therapist assessed his needs to submit equipment requests, and soon after, deliveries were arriving at his door – at no cost: a raised toilet seat with handles, a bench seat for the shower, a wheelchair-backed toilet seat, four different cushions, an electric lift, a chair lift, a hospital bed and mattress, and four different types of wheelchairs.

Altogether, Mark has had access to borrowing $45,000 worth of equipment, thanks to the ALS Canada Equipment Program which is wholly funded by donors.

The equipment has made a world of difference not only to Mark, but to Sandra and his personal support workers too. Mark can maintain as much independence, comfort and dignity as his body allows, while his caregivers are safer and have a much easier time lifting, moving and helping him. Even Mark’s five-year-old grandson, Keaton, has learned how to work every machine in the house. Although Keaton is still too young to understand what’s happening to his grandfather, he knows how to carefully position Mark’s legs, hands and mouthpiece.

“All Mark’s grandkids keep his spirits going,” Sandra said.

Mark is one of many Ontarians living with ALS who need a wide range of equipment to cope with the daily challenges of decreasing mobility and communication ability. It starts with a walker or a wheelchair, and depending on the speed of someone’s disease progression, can snowball into many more items that can cost thousands of dollars.

Without the ALS Canada Equipment Program, families’ like Mark’s would either carry a heavy financial burden, or they’d have to go without the equipment they need. That means they wouldn’t be able to move around; to bathe or use a toilet safely; to get on and off a bed; or even to hold their heads up.

“ALS Canada always had the next thing we needed,” Sandra said, adding that the organization has been quick to respond to their requests. Although their experience has been extremely positive, they’re well aware that people have to wait longer periods of time to access equipment if what they need isn’t readily available, a reality of a donor-funded program.

With this understanding and gratitude for support received, Sandra has become a highly motivated fundraiser and advocate. Every year, she passionately raises money through the Walk to End ALS in her hometown of Cornwall. She’s delighted that 60% net proceeds raised goes directly toward community-based support services for people living with ALS in Ontario.

“In years and years to come, I will be one of the pushers to make sure that the equipment program carries on,” Sandra said. “Fundraising for the program is one way, but we also need all levels of our government to step up. I’m going to fight for those who need this.”