There’s hardly a spot left on Jane’s left arm these days. That’s because so many of her family, friends, and neighbours are getting a tattoo with Jane — they choose one that’s meaningful to them and Jane gets the same one on her own arm. This shared bond will be an everlasting part of her legacy when she’s gone. It’s a powerful way to raise awareness about her disease.
Jane and her husband David learned she had ALS in 2020, after a slur in her speech and a series of tests revealed she had bulbar onset ALS. “Bottom line, everything changes,” Jane says. “Many thoughts go out the window in a split second. Priorities shift drastically, and your energy goes into things that you never would have thought of before, simple things. Energy is put into daily living and things that I used to take for granted have now come to the forefront, like walking, eating, and sleeping.”
David is Jane’s caregiver and is by her side 90 per cent of the time. He helps her do her hair and put in her contact lenses, but Jane still insists on maintaining much of her independence. She loves to cook, and she continues to do a lot of the invoicing for their small business. Last year, she crossed an item off her bucket list when she landed a tandem skydive on a local beach, surrounded by her community, to raise awareness and support of ALS and ALS Canada. You too can show your support by making a gift today.
At this point in her progression, Jane and David are more and more concerned about falls. “Jane is losing strength in her left leg due to drop foot, and her left arm and hand have become weak to the point that keeping balance has become challenging,” David says. “And while we are starting to use equipment like braces and walking devices, it has now become more of a loss every day. This is just another chapter in the relentless progression of ALS — a new sense of loss every passing day.”
Holidays are built on traditions and memories, and with ALS, simple traditions become more and more challenging. “We often take our daily lives for granted, and life altering conditions make the once joyous holidays very difficult. Our family and close friends visiting will create ‘different’ memories and reflecting on the past can become a very sad time for the present,” Jane says.
“For people living with ALS, we cannot help but think of past holidays when life was normal. We find ways to share moments and reminisce about the good times, funny times, and great stories that do bring a smile. But milestones and holidays become a gateway for thinking about the past, and the future, which can be frightening at times.”
Jane and David’s two daughters watch in dismay as their mother’s condition deteriorates month after month. They wonder if one day they will get ALS too. As a family, they hope advancements in research will lead to new treatments that can reverse the course of the disease and that people living with ALS will have an improved quality of life, two things that ALS Canada advocates for and supports. “While I still can,” says Jane, “I will live my life to the fullest and inspire my community to learn about ALS. I will bring my passion for engaging people into my world…so that one day it will all be worth it.”
Steven Gallagher has chosen hope and optimism over despair and gloom time and time again; H-O-P-E are four letters that have guided him over the past three years and throughout his life.
Those who follow Steve on social media know he has been very open and vulnerable about his experience with ALS since being diagnosed in 2019 at the age of 47. What many people don’t know is this isn’t the first time he has had to deal with a serious illness. When Steve was seven years old his father died from multiple sclerosis. When he was a teenager, his mother died suddenly from a brain aneurysm. As a father now to an eight-year-old daughter named Olivia, the knowledge she might lose her dad at a young age devastated him.
When Steve thinks about the potential new therapies and research that are in the pipeline, and when he thinks about the positive momentum in the ALS community over the past few years, he finds renewed hope. Although his mobility has decreased, Steve is grateful to be on ALBRIOZA, the third approved treatment available in Canada, a positive reflection of the research underway and the ALS Canada research team’s commitment to keeping Canada top of mind for pharmaceutical companies in the ALS space. You can help ALS Canada continue its work by making a gift today.
As much as he chooses to live his life with courage, there are no shortage of challenges. Recently, Steve tweeted, “Some days my hope fades living with ALS. You’re constantly reminded of the beast wreaking havoc on your body. The weakness, the falls, the struggle to breathe. But then I’m inspired after seeing the bravery of fellow ALS warriors, and it restores my hope. Thank you.”
The irony of ALS is that it will often rob people like Steve of their voices, but he continues to use his voice to raise awareness and advocate with ALS Canada for equitable and timely access to therapies and meaningful policy changes for families living with ALS. “When I was diagnosed, I pledged to be an advocate and help raise awareness of a disease I knew very little about. I’ve been able to raise awareness through social media and media interviews, and by working closely with ALS Canada to support the cause,” Steve says.
For Steve, the present is all about savouring his time with family and friends and doing what makes them happy together. “I really try to cherish the moments and stay in the moment,” he says, adding that he hopes to continue to travel. “While I still can, I will continue to focus on what I CAN do, rather than dwell on what I can’t do.”
Anne-Marie Marcil considers herself the luckiest unlucky woman. Last year, in April, amid all the uncertainty of the pandemic, she was diagnosed with ALS at just 46 years of age. As a mother to two young daughters, aged seven and 10, this profoundly and unexpectedly changed her outlook on life.
“I do not dwell on the little things that used to keep me up at night,” she says. “Now it’s all about relationships and interactions with people I love and who love me.”
Shortly after receiving her diagnosis, Anne-Marie was connected to her ALS Canada Community Lead, who has helped her and her family get access to much needed equipment including walkers, wheelchairs, ramps, lifts, and a recliner chair. This equipment helped Anne-Marie maintain her dignity and mobility as the disease progressed, eventually taking away the use of her legs and her independence. “I transfer to my bed and into my recliner chair with a mechanical lift. I can never be alone and need help with pretty much all tasks,” Anne-Marie says. “Luckily I am surrounded by family and friends who take turns being my buddy for the day.”
Anne-Marie also started attending support groups that her Community Lead facilitates where she has met other people and their families living with ALS, providing her with solace in understanding that she and her family are not alone. “Unfortunately, the disease has progressed a lot more rapidly than we had anticipated. I know that my time is limited, which is why I insist on making the best of every day,” she says.
While she recognizes that a cure may not be found during her lifetime, Anne-Marie finds the amount of research being done on ALS encouraging. She finds some comfort in knowing that one day, hopefully in the not-too-distant future, the disease will no longer be fatal. She also hopes to leave a legacy of strength and resilience to her children as they go on this journey with her. You can help bring Anne-Marie’s legacy to life by making a gift in support of ALS Canada today.
“It is very important to me that my children are proud of me with the way I’m facing this disease,” Anne-Marie says. “They might not realize it now because they are still young but down the road, when they think of me, I hope they find strength in knowing that even as my body was failing me, I continued to see the glass half full and to give them the best of me for as long as I could.”
The holiday season has always been Anne-Marie’s favourite time of year and she wants to enjoy this time as much as she can. “This disease does not define me, and I refuse to let it crash my party!” Anne-Marie says. “I would tell families in similar situations to try and enjoy time spent with family and friends. We all know there are tough times ahead but perhaps this December, we can take somewhat of a break from the harsh realities of this disease, be together, and share in a little joy. We are here now; we can deal with tomorrow, tomorrow.”
“While I still can, I will cherish my time with my children,” Anne Marie says, “I will hug them, tell them I love them, and teach them not to give up in the face of adversity. I will continue to visit with friends and family as much as possible, as that is truly what keeps me alive. I will go outside and breathe fresh air. Eat my favorite meals and drink good wine! It’s that simple.”
Miles4Matty is part of Adam Foley’s search for meaning after losing his brother, Matthew (aka Matty), who passed of ALS in 2014 at the age of 38. Adam and Matthew were roommates at the time of the diagnosis. When Matthew’s mobility became a significant challenge, they moved into a more accessible apartment together where Adam continued to be his caregiver. When Matthew chose to move out on his own and become a resident of Artscape’s Wichwood Art Barns, Adam stayed nearby. Matthew’s passion was photography, and this move allowed him to live among fellow artists who shared his passion for art and creativity.
Sharing such a close bond and witnessing his brother’s physical decline as the disease progressed was harrowing. “When I was struggling, cycling was an outlet for me,” says Adam, “a time to leave it all out on the road and prepare myself for what was coming next.”
Matthew Foley
Now Adam is pedaling to make some sense of all that has happened. He believes in aiming high. He’s taken a break from work to focus full-time on spearheading a 900-km bike ride to generate awareness around ALS and raise $12,000 to help ALS Canada invest in promising research and essential community-based support services for people living with the disease in Ontario.
“Awareness is the long game,” explains Adam. He says it’s crucial for people to know more about ALS because that will ultimately drive fundraising. “People may not truly appreciate how devastating it is for families, and I want people to understand how badly patients and families need support because ALS takes, takes, takes… There’s not enough you can do to try to stop this vicious disease.”
Adam will not be alone on this journey as he’ll be riding alongside his good friend Geoff Agnew while their support vehicle will be “captained”’ by Adam’s other brother Sean. “Maybe it will be cathartic, a way to process my grief,” says Adam. “When you follow your gut and listen to your heart, there isn’t always a defined reason, rather a feeling that you know it’s the right thing to do.” Sean, who will be providing backup support, is looking forward to “being a witness and being of service on this pilgrimage and helping to spread awareness about ALS.”
Miles4Matty will take Adam and Geoff from Heritage Field, site of the original Yankee Stadium, to downtown Toronto in approximately nine days. The ride coincides with ALS Awareness Month in Canada (June) and will overlap with the 80th anniversary of Lou Gehrig Appreciation Day on July 4th, a day that honours the famous Yankee first baseman whose name became synonymous with the disease. The connection with baseball also resonates because the Foley brothers grew up following the Toronto Blue Jays, attending games at Exhibition Stadium before they could read. Beginning the ride where Lou Gehrig rose to fame and ending at the Blue Jays’ home city adds another layer of meaning for Adam and Sean.
Living close to the effects of ALS often shifts people’s perception of time. “My brother’s ALS made me angry that his time was cut short,” explains Adam. “I guess it’s made me slow things down, appreciate the moment and be more aware.” He also feels a deep sadness for what he has lost. At 41, Adam is a father for the first time. Knowing Matthew won’t be there to watch his 17-month old son, Nolan, grow up has left a huge chasm.
For Adam, Geoff and Sean, this is the right time to step up and help drive momentum forward while remaining hopeful that new treatments can alter the course of the disease for the better. Adam is hopeful for a cure that will end ALS altogether. Sharing his story from a place of authenticity is a starting point. Raising money will also provide support to people and families living with ALS in Ontario.
There will also be room for insight. Miles4Matty will give Adam and his team ample opportunity to reflect through Matthew’s lens: “He had a great gift for seeing beauty in objects and moments that some of us might overlook.”
Richard Ellis and Cathy Payne met on the first day of high school and they immediately became friends. Their friendship continued throughout university, as they grew into adulthood and began their careers, up until her passing in 2004 at the young age of 41.
News of Cathy’s diagnosis came as a shock to Richard because he didn’t realize that someone in her late 30’s could be affected by ALS. Richard felt privileged to be part of her inner circle and to be part of her support team – participating in fundraising efforts, lending help when it was needed and most importantly, being able to spend time with her.
He also experienced the challenges that people and families living with ALS face on a daily basis.
I know how challenging it is to care for a loved one living with ALS, and I saw first-hand the invaluable support that ALS Canada and its staff provide. Whatever we needed—information, counseling, equipment to keep Cathy mobile or make her home more accessible —they were there.
Richard Ellis
After witnessing Cathy’s struggle with the disease and its impact on her and those closest to her, Richard felt moved to leave a donation that would directly help those facing an ALS diagnosis, as well as the research needed for a future without the disease. Leaving a gift in his will was a way for Richard to celebrate the life and memory of his friend.
Legacy giving is an important investment and a demonstration of your strong commitment to a cause that means a lot to you. These types of gifts, including bequests, gifts of life insurance, stocks or securities, and others, have a lasting impact and can ensure that your loved ones are provided for in the future, while allowing you to make a meaningful contribution to a charity and cause that matters to you.
May is “Leave a Legacy” month and Richard recently spoke with Paul Nazareth, Vice President of Education and Development at the Canadian Association of Gift Planners about legacy giving. Watch the video to learn about the head and the heart of this type of giving; and how to start the conversation to create a legacy and make a meaningful impact for the ALS community.
Lolo Lam has a deep sense of gratitude for the sacrifices her parents made leaving Hong Kong so she and her two brothers could have a better life in Canada. She was only a child at the time, but she still remembers her parents taking her to a protest rally during the summer of 1989 after government troops fired on civilians in Tiananmen Square.
Now a mother of two young children, Lolo laments the loss of her dad. He died of ALS in 2010. Talking about how this terminal disease trapped him in his own body still brings her to tears. “It is especially difficult during the holiday season when the family gathers and unites,” she says. “It reminds me that other families are grieving from the loss of their loved ones or are going through their own difficult journey with ALS right now.”
“My parents’ decision to leave Hong Kong had a huge impact on their financial situation. So, to thank them for their selflessness, I‘ve always tried to give back,” says Lolo. “During the holidays, I still take my mom out for an extravagant dinner somewhere to maintain a special tradition I started when my dad was still alive.”
Lolo’s desire to give back has never been more focussed. She is a passionate advocate toward making a future without ALS a reality. “Whenever ALS Canada approaches me for help to raise awareness or fundraise,” says Lolo, “I am there. I’ll do whatever I can.” For seven years running, she has coordinated corporate teams through her work at Equitable Bank and has fundraised over $20,000 for the annual ALS Canada Plane Pull to End ALS, increasing support for the event within her organization every year.
ALS research is at the top of Lolo’s lists of priorities. “When my dad was sick, there were things I could do to help like attend medical appointments or take night shifts to give my mom a break from full-time caregiving. But it was disheartening knowing there was no cure, and knowing that I would eventually lose him and there was nothing that could be done about that,” she explains. “Working toward a cure helps me heal,” she adds.
“You always think your parents are going to be around for you. Being hit with the untimely loss of my dad was life-changing,” says Lolo. “He was robbed of the fruits of his labour, precious time with his family, growing old with my mom, spending time with his grandchildren. We were all robbed. We all would have loved more time with him.”
Despite the pain, she refuses to get stuck in a cycle of self-pity. “I have a calling now to honour my dad. If I can help in any way possible, then I’m going to give not just my money but also my time. I know that by supporting ALS Canada, help is going directly to the people who need it.”
“It’s about time that more people get involved,” she urges. “We need you now.”
Deirdre O’Connor and her husband, Floyd, became ALS Canada donors 15 years ago. At the time, they had no personal connection to the cause, but they liked the fact that ALS Canada was a small, cost-effective charitable organization without a lot of overhead. Deirdre’s generosity extends to half a dozen or more organizations she supports on a regular basis, but with ALS Canada, she has deepened her commitment beyond annual giving by making a bequest in her will. In her words, “It’s a way to pay it forward, to leave a lasting legacy that will benefit people with ALS in the future.”
When official news of Floyd’s ALS diagnosis came in 2012, the couple, both retired at the time, turned to ALS Canada for help. “I never knew we would end up depending on ALS Canada for so much support,” says Deirdre. “Floyd’s greatest wish was to remain at home, and I realized I would never be able to give him the kind of care he needed on my own.”
As Floyd’s condition worsened, Deirdre relied on her ALS Canada regional manager, Sarah, to help acquire different types of equipment on loan such as walkers and a wheelchair for mobility, a bath chair to help with bathing, and a special bed to make sleeping easier. During the two years Floyd lived with ALS, Sarah became Deirdre’s first point of contact when any new problem cropped up. “I knew I could just pick up the phone and ask a question and there would be someone there to help me,” she recalls. “That’s what mattered most.”
The kind of support ALS Canada Regional Managers give when it is most needed often becomes a lifeline for people struggling as their loved ones grow weaker by the day. In Deirdre’s case, the practical and emotional support she received from Sarah directly, and through attending monthly support meetings with other family members struggling with the same challenges, meant she was not alone.
When Deirdre explains why she decided to make a legacy gift to ensure the future of ALS Canada, she speaks from the perspective of someone who knows first-hand what emotional support and practical help can do to ease the burden of living with ALS. In turn, we are extremely fortunate to have generous and caring donors like Deirdre O’Connor!
Did you know?
In Canada, May is “leave a legacy” month, which encourages people 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 the day where ALS will be a treatable, not terminal disease.
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.
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Adam will not be alone on this journey as he’ll be riding alongside his good friend Geoff Agnew while their support vehicle will be “captained”’ by Adam’s other brother Sean. “Maybe it will be cathartic, a way to process my grief,” says Adam. “When you follow your gut and listen to your heart, there isn’t always a defined reason, rather a feeling that you know it’s the right thing to do.” Sean, who will be providing backup support, is looking forward to “being a witness and being of service on this pilgrimage and helping to spread awareness about ALS.”
