Category: Advocacy

Continuing our journey through ALS Canada’s priorities

We are pleased to highlight the transformative role of advocacy within the organization. Advocacy is the force behind significant policy changes and system-level actions that bring hope and necessary resources, care, and treatment options to people affected by ALS.

A united voice for change

At ALS Canada, we harness the collective experiences of people living with ALS to drive meaningful change. Our advocacy efforts are focused on creating a more supportive environment for people with ALS by engaging with government officials and key decision-makers on both federal and provincial (Ontario) levels. Your support enables us to fight for equitable, timely, and affordable access to therapies, improved home and community care and increased research funding to accelerate the discovery of new treatments and, ultimately, a cure for ALS.

Empowering through policy engagement

Our advocacy work is grounded in the following:

• Policy Influence: We advocate for changes that look to significantly impact the lives of people with ALS today and in the future.
• Community Collaboration: We empower individuals affected by ALS to share their stories, demonstrating the real human impact ALS has on people’s lives. These stories are central to our push for faster access to therapies, increased research funding, and a more responsive healthcare system.

Recent achievements and ongoing efforts

• Through collective action, ALS Canada, alongside key members of the ALS community, has secured the Ontario Government’s commitment of $13 million over three years in the 2024 Fall Economic Statement to support the  Ontario Provincial ALS Program.
• We have successfully advocated for swifter drug approval processes and increased government investment in ALS research.
• Our collaborative efforts continue to support the approval and reimbursement of new therapies, making Canada a leader in accessible treatment options for ALS.
• ALS Canada’s Canadian ALS Learning Institute (CALI) empowers participants with knowledge crucial for effectively advocating for access to Health Canada-approved therapies, strengthening their ability to influence healthcare outcomes.

Each story shared and every policy influenced echoes your role in this journey—your contributions enable these vital advocacy activities, ensuring that the voices of the ALS community are heard loud and clear.

Join us in our advocacy efforts

Get involved and help us continue to advocate for necessary changes in ALS care and research. Together, we are not just advocating; we are making real changes that make lasting improvements for people affected by ALS.

Thank you for your unwavering support and for believing in the power of advocacy. This series’s next and final post will explore how we disseminate knowledge, empowering the ALS community with information and advancing awareness and understanding of ALS.

ALS Canada’s work is empowered by community. Discover how, in 2023, our collaboration with clinicians and investments in research aims to enhance care and the potential for future treatments.

CALS Research Network: Connecting Canada’s clinicians and researchers

As a national convenor of the ALS community, ALS Canada was proud to provide the foundational funding to establish the Canadian ALS Research Network (CALS) in 2008. The network was established to formally unite clinician researchers and to demonstrate to the pharmaceutical industry the benefits of bringing clinical trials to the country.

Recognizing the significance and effectiveness of CALS in uniting clinicians in Canada to accelerate research and improve care for people affected by ALS and their families, ALS Canada assumed administrative management of the network in 2017.

“CALS informs all areas of our mission as a trusted source the ALS community can rely on,” says Colleen Doyle, Senior Manager of Research and CALS at ALS Canada. “These are the experts doing the work in our communities, whether in a clinical setting or within the lab, working to advance what we know about the disease and potential treatments.”

Over the past five years, CALS has grown significantly, doubling its membership and extending its reach across Canada. This growth has strengthened its ability to collaborate effectively as a network, providing opportunities to mentor early career clinicians, partner more closely with pharmaceutical companies to bring promising clinical trials to Canada, and support grassroots research efforts led by physicians. Since its inception, more than 35 ALS clinical trials have taken place at CALS centres across the country.

These efforts have helped develop resources to assist people living with ALS, clinicians, and allied health professionals. This includes ReferALS, designed to help general neurologists recognize ALS symptoms earlier and refer potential cases to a CALS clinic. By speeding up the diagnosis process, ReferALS ensures quicker access to vital care, approved treatments, and the possibility of participating in clinical trials, all of which can make a significant difference in slowing down the progression of the disease and enhancing the quality of life.

In 2023, ALS Canada surveyed CALS members to gain insights into their communities’ support and healthcare services. Thanks to the collaborative nature of its membership, the survey had a high response rate and will help identify gaps and barriers faced by people living with ALS. With this valuable data, ALS Canada and our partners are better equipped to advocate government for improvements and ensure equitable access to care for everyone affected by ALS.

Drawn to the mysteries of ALS research

It was the mystery surrounding the disease that drew Dr. Alex Parker to ALS research. Since his grad school days, he has had a deep interest in neurodegenerative diseases, their onset, progression of symptoms, and their variation between each person diagnosed.

To help solve this mystery, Dr. Parker’s team at the Department of Neuroscience at the Centre de recherche du CHUM at Université de Montréal is investigating the microbiome, a natural collection of bacteria and other microbes that play a crucial role in maintaining our health, including possibly our brain and spinal cord. The team has developed simple ALS models using worms to better understand how motor neurons degenerate and explore whether

Thanks to the support of the ALS Canada Research Program, in partnership with Brain Canada, the team has made significant progress in its research. Investigating the effects of probiotics has the potential to lead to new ALS therapies, and this area of study has successfully led to clinical trials for other diseases. In Dr. Parker’s lab, certain probiotics have been found to be protective in the ALS models, one of which will be tested in an upcoming clinical trial. These trials could provide promising new clues to unlocking the mysteries of this terrible disease.

“Although I spend most of my time in the lab, I know that figuring out ALS is more than an academic exercise. It is a race against time for people living with the disease,” says Dr. Parker. “The speed at which ALS progresses can be fast, and it’s almost always devastating, so I appreciate that the ALS community needs answers as soon as possible.”

Walk, ride, or pull – no challenge is too big when it comes to supporting a world free of ALS. Year round, ALS Canada events bring together the community, demonstrating your commitment to raising awareness, honouring the people we’ve loved and lost, and ultimately helping change the future of ALS.

Creating change with community: ALS Canada 2023 events   

For everything that ALS takes, the connection of a community is one thing it can’t. Each year, we are reminded of the strength, commitment, and impact the ALS community has as we come together.

We’ve said it before – our events are more than just fundraisers; they are a true demonstration of a commitment to changing what it means to live with ALS. From local communities to the greater ALS community, hundreds of people rally together for change at our annual events.

In 2023, the power of community was hard to ignore. For Tony Mongillo, who lost his father, Joe, to ALS in 2010, participating in the ALS Canada Pull to End ALS is a chance to bring together family and friends. Mongillo’s team, “No Ordinary Joes”, is a large and energetic force at the event passionately showing their support for people living with ALS and their families. Jumping in as extra pushing power when opposing teams need a little help – Tony and his team made it very clear: community support creates change.

It’s hard to deny the feeling of unity in the face of adversity as we come together – a feeling that can resonate more than the impact of funds raised. “So many others across Canada need the same level of support and care we received. It’s critical that we come together as a community to fund ALS Canada’s essential services, and ALS research that could one day find a cure,” says Michael Petrachenko, who lost his wife, Monique, to ALS in 2022. After years of participating in the ALS Canada Walk to End ALS with Monique by his side, at the 2023 Walk to End ALS, Michael continues to lead “Team Unique Monique”, sure that she’d be so happy to see them raising money and awareness in her honour.

A new face at the 2023 ALS Canada Revolution Ride, Matthew Horowitz showcased the impact getting into gear, with the support of community, creates. Though not a big cyclist himself, Matthew and his team “Big Mike and the Boys” rallied together for change after his father, Michael*, was diagnosed with ALS in January 2022 (*Michael Horowitz passed away May 2024). The team raised a staggering $110,659 – Matthew himself raising more than $104,000 of that total – to help people living with ALS and their families just like his.

Together, we can achieve more. The presence of a community connected is strong at ALS Canada events across Canada – a potent reminder that as a community we are creating change, raising awareness, and working a world free of ALS.

Teaming up to take our shot with the ALS Canada Buck-A-Puck for ALS

Shifting from making a shot on the opposing net to taking a stand against ALS was an easy choice for three young hockey players from Etobicoke.

In September 2021, Steve Daly – coach for the Humber Valley Sharks U12 A hockey team – was diagnosed with ALS. Although disease progression persisted, Steve never backed down from being a strong coach and embodying the values of perseverance and determination he encouraged in his players. After losing their coach to this relentless disease in January 2022 the Humber Valley Sharks vowed to make ALS history. Before everyone knew it, Buck-A-Puck for ALS was born with a concept simple yet powerful: raise a buck, shoot a puck.

Buck-A-Puck for ALS began as a community event with The Stevie Fever for ALS Foundation, to honour Coach Steve, organized by Sarah Lopez and Heather Evans, along with Joshua Lopez, Liam Muffitt, and George Daly of the Humber Valley Sharks. “Buck-A-Puck for ALS was a way to channel all the emotion experienced as Steve was challenged by the disease – to show the kids that there is always a way to help, even if it seems like there is nothing you can do,” Heather explains.

After just the first year, the team had raised more than $90,000 within a small Etobicoke community – a true testament to the power of coming together. “What we’ve already accomplished through Buck-A-Puck speaks to what can happen in the future – there is a lot of potential with what it can achieve to make a change,” Liam says. To take their grassroots fundraiser to the next level, the team partnered with ALS Canada in 2023 evolving to a nation-wide initiative as the ALS Canada Buck-A-Puck for ALS.

With support from hockey players and fans across Canada, taking their shot at the net to change what it means to live with ALS, Buck-A-Puck for ALS got one step closer to the ultimate goal of $1 million raised for ALS research. In 2023, thanks to a passionate hockey community and a shared commitment to creating a world free of ALS, Buck-A-Puck for ALS raised $60,000 and counting! ALS Canada is excited to continue to work alongside the Buck-A-Puck organizers – fostering the growth of this passionate initiative, uniting a love for hockey with the desire to make a difference to create a lasting impact in the fight against this debilitating disease.

Evoking change through connection

The impact of an ALS diagnosis is unrelenting. Navigating a reality no one chooses but is forced to face, the accompanying challenges can feel isolating.

At ALS Canada, we believe in the power of storytelling. Creating the space to share lived experiences and invite conversation to generate real impact. Impact in fostering a sense of connection to remind you that you are not alone while navigating ALS and educating others about the realities of living with the disease, inspiring them to get involved. In 2023, we shared the stories of our communities, highlighting the realities of living with the disease and the urgent need for change during for our “While I still can…” campaign.

Community members Mehboob, Sandra, and Chris shared their experiences of their lives changed by ALS. Honest, direct displays of the impact of this devastating disease not only creating awareness, but also illustrating that we’re in this together. In the midst of raising funds for a world free of ALS during Giving Tuesday and the holiday season, our community raised their voices on social media in response to the experiences shared. Offering words of support, reflection, and hope – uniting us.

During our “While I still can…” campaign, we witnessed, as Mehboob explains, “what collective compassion and commitment can achieve.” The stories of lived experience and the truth of what people living with ALS and their families are going through drove involvement and commitment for a difference raising more than $605,000 in generous donations. A testament to the power of storytelling, our truths, and that we are not alone – there is a community right here.

ALS Canada’s work is empowered by community. Discover how, in 2023, our work within the ALS community helped people affected by the disease feel empowered and informed to make decisions and engage in advocacy efforts.

Empowering advocacy with the ALS Canada Canadian ALS Learning Institute

The landscape of ALS research is ever-changing as researchers continue to make developments. However, research is just half of the journey – ensuring effective treatments are understood and accessible is critical to supporting Canadians living with ALS, and nobody understands this better than those affected by the disease right now.

ALS Canada seeks to empower Canadians affected by ALS with the right knowledge, tools, and support to navigate its current realities and advocate effectively for change. That’s why the Canadian ALS Learning Institute (CALI) was created – a small-group learning experience for people affected by the disease to better understand the Canadian ALS landscape, clinical research, therapy development, and how to advocate effectively.

Since the CALI launched in 2021, graduates of the program who become ALS Canada Community Ambassadors, have shown power in their advocacy efforts, actively putting their learnings into action. Jennifer Hutton, graduate of the 2022 CALI cohort, jumped into advocacy straight away following her husband’s ALS diagnosis in 2021. “I had the power and passion to advocate but I felt that I lacked the knowledge needed to fully put myself out there,” said Hutton, leading her to reach out to ALS Canada and discovering the CALI.

“The CALI outlined the current state of ALS from all avenues including gaps in healthcare, research, drug development and support. I’ve been able to use that knowledge when speaking with and advocating on a much broader scale than just my personal story.” Since graduating from the CALI and becoming an ALS Canada Community Ambassador, Jennifer has been able to engage various government officials in her home province, including Nova Scotia’s Premier and provincial health minister, as well as create a relationship and consistent dialogue with the Ministry of Health and Wellness support staff.

“[Participating in the CALI] you gain an entire community of people that will help support you and mentor you through your journey in not only advocacy, but ALS in general,” says Hutton. As she continues forward on her own advocacy journey, backed by the CALI community, she leaves some words of advice for anyone affected by ALS interested in beginning theirs, “Be patient. It’s not easy, but it’s worth it. Lean on the community for support and keep going.”

ALS Canada’s work is empowered by community. Discover how, in 2023, our efforts to support the ALS community ensured that people affected by ALS received the highest standard of care possible, and helped loved ones pursue their education goals.

It takes a community: Supporting people with ALS

Living with ALS can have many challenges, but with the support of the community, people living with the disease can navigate their journey with greater ease. ALS Canada’s Community Leads (CLs) in Ontario play an important role by offering individualized support to people diagnosed with ALS and their circle of support, which can include family members and health care professionals.

“Our support is individualized from person to person based on the progression of the disease, symptoms, and resources and supports are available in their community,” says Kim Barry, Vice-President of Community Services at ALS Canada. “There’s no waitlist; when someone is diagnosed, they are referred to our Community Leads, who are specialized in supporting someone living with ALS. They are there to help answer questions, support symptom management, and evaluate and facilitate the medical equipment needed now and in the future.”

ALS affects more than the person living with the disease. It’s common for a spouse or child to take on the role of primary caregiver, who will also have questions of their own about how to best assist their family member. In addition to providing information and resources to the caregiver, it’s not uncommon for a CL to support at least six additional people within a person’s care network who will have a role to aid in some way.

Navigating ALS becomes significantly less daunting for people affected by the disease, especially when they have access to someone who has been through the journey. This proactive approach not only offers a lifeline but also opens up an opportunity to maintain an important level of quality of life, safety, and independence, bringing a sense of relief and comfort.

“Although an ALS diagnosis can be devastating, it’s important to know that there is still life to enjoy,” says Kim. An example Kim shares of a recent client experience, “When John was diagnosed, that same day we were connected and scheduled a time to meet with him to discuss his initial questions. In the following weeks, the Community Lead worked closely with him and his wife to determine the care they wanted and when they wanted it. ALS is different for everyone; each day can bring a new complexity that can be easily managed with support, whether transitioning to a new mobility device, assistance with paperwork for transportation, or a referral to an allied health professional in the community. Ultimately, it’s about providing help and support, so the family can stay together at home.”

Giving back for a brighter future: recognizing resilience with the ALS Canada Kevin Daly Bursary

No one better understands the adversities while navigating a loved one’s ALS diagnosis than the ALS community themselves. The profound impact of the disease creates hurdles when thinking about achieving goals and aspirations created prior to a diagnosis. Life with ALS is different for everyone, but the mark it makes on each person drives a sense of compassion and desire to support others in the community.

In 2023, in partnership with the friends and colleagues of ALS community member Kevin Daly, ALS Canada sought to support young people navigating the impact of ALS. In celebration of Kevin, the ALS Canada Kevin Daly Bursary was created – inspired by his courage and dedication to other ALS families. The $2,500 bursary is awarded annually to post-secondary students across Canada whose lives have been touched by ALS. “Empowering students affected by ALS with this bursary not only eases their financial burdens but also sends a powerful message of a community connected and an understanding of the realities children face when a family has been impacted by ALS,” says Tammy Moore, CEO, ALS Canada.

The 2023 ALS Canada Kevin Daly Bursary was awarded to three students across Canada – Catherine Brassard, Daniella D’Amici, and Sarah Jacob – providing dual-purpose support through financial relief and community connection. “Day to day, it can be stressful, so having an external form of security makes a huge difference to me,” says D’Amici. “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.”

“Receiving this bursary represents a source of comfort in a particularly difficult period, as it eases an emotional and financial burden. Having proof that my difficulties are recognized and supported encourages me to cultivate my resilience,” Brassard says. Supporting young adults navigating not only their goals for further education but also the harsh reality of ALS is critical to the future of ALS. ALS Canada and the Daly family congratulate the 2023 recipients for their resilience and academic dedication and look forward to supporting more students in the years to come.

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.”

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 80^th 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.

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.