Category: Article

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.

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.”

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 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.”

In early March, members of the ALS community joined ALS Canada in Ottawa for two days of advocacy training and meetings with politicians and other government officials. From people living with ALS  and their caregivers and family members to researchers, clinicians and volunteers, our delegation of 35 people made the following asks of the federal government: make substantial changes to the drug access pathway that will enable equitable, timely and affordable access to ALS therapies; and provide funding for dedicated ALS research to contribute to the development of those therapies. More specifically:

• Ensure Patented Medicines Prices Review Board (PMPRB) reforms don’t impact patient access.
• Follow through on drug access commitments, including expediting the creation of the Canadian Drug Agency so that the timeline for drug approvals and reimbursement decisions is shortened.
• Include people with lived experience in the decision-making process.
• Implement the House of Commons Standing Committee on Health (HESA) recommendations on open-label extensions.
• Fund dedicated ALS research by supporting CAPTURE ALS, a Canadian-led open science platform of comprehensive biological data from 1,000 Canadians living with ALS that will enable the study of why ALS progresses differently in people.

Our meetings were positive, with many government officials expressing a shared concern for the challenges faced by the ALS community and a willingness to take two specific actions: joining the all-party ALS Caucus and writing a letter to the Minister of Health in support of the asks. Thanks to all who took part in the day for your commitment, time and courage and to the MPs, Senators and staff who met with us.

What you can do: 

While the advocacy day meetings helped to kickstart discussions with government following the 2019 federal election, continued outreach and engagement will be essential. We have identified a number of follow-up activities that we will look to begin implementing in the coming weeks once opportunities for engagement are more available. Maintaining our momentum will be important, but must be balanced with the priority response being given to COVID-19 to ensure that our outreach is as effective as possible.

We will continue to provide updates on this blog about ways to advocate for substantial changes to Canada’s drug access pathway and dedicated ALS research funding. Also – keep an eye on our social channels for updates and information. Together we are stronger, and your actions can make a difference.

More Information

In addition to the links provided throughout the above article, these additional information resources provide more background and context about the asks:

• Webinar: How to get involved in advocacy for access to ALS therapies
• Blog post: How new drugs become approved and available to Canadians
• Letter: ALS Canada’s response to the 2020 PMPRB public consultations
• Federal Budget 2019: Moving Forward on Implementing National Pharmacare

While on Parliament Hill, we had more than 25 meetings with MPs, Senators and their staff, including:

• MP Darren Fisher, Parliamentary Secretary to Health
• MP Ron McKinnon, Chair of the House of Commons Health Committee
• MP Matt Jeneroux, Vice-Chair of the House of Commons Health Committee
• The office of MP Don Davies, NDP Health Critic
• MP Francis Drouin, Chair of the ALS Caucus

ALS Society of Canada rallying the community together to bring awareness to nearly 4,000 Canadians living with ALS and their families.

Toronto, Ontario – ALS Awareness Month kicks off June 1, as the ALS Society of Canada (ALS Canada) brings the community together to build recognition of what amyotrophic lateral sclerosis (ALS) is and the impact the relentless disease has on nearly 4,000 Canadians living with the disease and their families.

“An ALS diagnosis can be devastating. What we want people to know is – you are not alone,” says Tammy Moore, CEO, ALS Canada. “ALS Canada’s mission is to work with the ALS community to improve the lives of Canadians affected by ALS through advancing research, care, advocacy, and information. We realize that with each person diagnosed, there are roughly six additional people we touch within their circle of care. It’s important that we’re here, united together in our support. At ALS Canada, we do this by empowering people living with ALS to navigate the current realities of the disease, be informed consumers of ALS information, and advocate effectively for change. We also invest in high-quality research, that will fuel scientific discovery and hopefully lead to more approved therapies and improved quality of life.”

ALS is a neuromuscular disease that progressively paralyzes people because the brain can no longer communicate with the muscles of the body that we are typically able to move at will. As a result, people with ALS often face a swift decline in the ability to talk, walk, eat, swallow, and eventually breathe. There is currently no cure for the disease that carries a lifetime risk of 1 in 300 for each of us. In addition to advancing research, care, advocacy and information, ALS Canada provides community-based services, including direct support provided by the ALS Canada Equipment Program and ALS Canada Community Leads to Ontario families living with ALS.

This June, help us recognize ALS Awareness Month by getting involved with ALS Canada in a variety of ways:

• Purple for Awareness. Keep your eyes open for lighting and illuminations of local landmarks in your area as they go purple to recognize this important month. Check out the CN Tower, Nathan Phillips Square, and Niagara Falls throughout June. Take action! Snap a picture and post on your social media channels and tag @ALSCanada to show your support.

• Lou Gehrig Day. Tune in on June 2 as Major League Baseball (MLB) recognizes Lou Gehrig Day, honouring the baseball great for his legacy and the awareness created for ALS around the world. The Blue Jays will mark the day at their home game.

• Global ALS Awareness Day. On Global ALS Awareness Day (June 21), ALS Canada will host a live webinar featuring the Chairs of the Canadian ALS Research Network (CALS) and provide an overview of the Top 10 exciting things about our understanding of ALS in 2024 presented by Dr. David Taylor, Vice-President, Research and Strategic Partnerships, ALS Canada. Register for free.

• Get Walk Ready! Get connected with the ALS community by joining the ALS Canada Walk to End ALS; for a complete list of dates and locations, visit walktoendals.ca.

• Become a Monthly Donor. During the month of June, sign up for our Circle of Hope Monthly Giving Program and your monthly gift will be matched for three months thanks to our generous matching donor. Sign up today!

• Share your story and stay connected. Whether you want to share your journey or keep a loved one’s memory alive, we encourage you to follow ALS Canada on social media at @ALSCanada on Facebook, Twitter, and Instagram. Let us know what #aWorldFreeOfALS means to you.

About ALS and the ALS Society of Canada

Amyotrophic lateral sclerosis (ALS) is an unrelenting and currently terminal disease. It progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. Nearly 4,000 Canadians live with ALS and approximately 1,000 Canadians are diagnosed each year. Four out of five people living with ALS will die within two to five years of their diagnosis.

The ALS Society of Canada is working to change what it means to live with ALS. Grounded in and informed by the Canadian ALS community, we respond to the urgent unmet need for life-changing treatments by investing in high-quality research that will fuel scientific discovery and by engaging industry, supporting increased clinical capacity and advocating for equitable, affordable, and timely access to proven therapies.

Responding to the tremendous need for current and credible ALS knowledge, awareness and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change. In Ontario, we provide direct community services to help people navigate ALS.

Founded in 1977, we are a registered charity that receives no core government funding – our work is powered by generous donors who share our vision of a future without ALS.

Join the conversation and connect with the ALS community online. Find ALS Canada on Twitter, Instagram, or like our page on Facebook.

For more information
ALS Society of Canada
media@als.ca
437-703-5402

In Canada, what the provincial health care systems provide does not always match the needs of people living with ALS. This statement rings true for Ontario, where the current ALS care and support landscape in the province presents people living with ALS with significant challenges that demand immediate action. 

The Issue

The impact of an ALS diagnosis on the person living with the disease and their family, caregivers, and community is tremendous and pervasive – physically, psychologically, and financially. In Ontario, more than 1,300 people living with ALS not only face the harsh realities of this disease daily but also a health care system that fails to meet their complex and progressive needs, leaving them without adequate care and support.  

Our Solution

To address this urgent issue, the ALS Society of Canada (ALS Canada), in collaboration with the five regional multi-disciplinary ALS Clinics in Ontario (Hamilton, Kingston, London, Ottawa, Toronto), developed the Ontario Provincial ALS Program.   

The Ontario Provincial ALS Program is a comprehensive solution that addresses the complex, critical needs of the ALS community. The program includes four key recommendations: 

Recommendation 1: Address the disparities in access to multi-disciplinary ALS Care 

Issue: Due to the complex nature of ALS, people living with the disease have substantial care and equipment needs that evolve and increase over time. Effective management of ALS requires access to multi-disciplinary ALS clinics where health care providers, such as speech language pathologists, dietitians, social workers, respiratory therapists, and occupational therapists, play a key role in optimizing care. However, Ontario’s five regional ALS clinics are beyond capacity, under-resourced and unable to meet the unique levels of care identified in the Canadian Best Practice Recommendations for the Management of ALS.   

Solution: The Ontario government to provide incremental investments to ALS clinics to standardize and enhance existing care models, optimizing ALS care and ensuring each person living with ALS in the province receives the highest quality care.

Recommendation 2: Improve the quality of life and help people living with ALS maintain their independence, dignity, and safety  

Issue: ALS is an incredibly isolating disease due to the lack of awareness and the increasingly difficult physical realities. To support a person living with ALS, their caregiver, and the people closest to them, they are connected to ALS Canada Community Leads located throughout Ontario. ALS Canada Community Leads provide direct, in-home support and individualized information and resource navigation to ensure people are well-supported, helping to augment the health care system.

As a person living with ALS progresses in their disease, so does their reliance on mobility and communication equipment and other assistive devices that help them maintain their independence, dignity, and safety. However, Ontario’s medical equipment programs do not meet the needs of people living with ALS as they are left with equipment for short-term use only or with devices that are outdated for their needs or not right for them, which can put both themselves and their caregivers or families at significant risk. In the end, people living with ALS and their caregivers must turn to ALS Canada, a donor–funded organization, to fill the significant gaps that exist in Ontario’s health care system.

Solution: The Ontario government to allocate funds to ALS Canada’s Community Services and Equipment Programs, ensuring people have access to the right equipment and assistive devices at the right time, improving quality of life and helping people living with ALS maintain independence, dignity, and safety for themselves and their caregivers. 

Recommendation 3: Provide coordinated oversight of ALS care  

Issue: The lack of comprehensive oversight and coordination for ALS care in Ontario hinders the province’s ability to gather critical patient information, which would inform evidence-based decisions to shape a health care system that meets the needs of the ALS community. Comprehensive data capture, knowledge dissemination, and system planning are essential for a coordinated approach to ALS care. 

Solution: Formation of a secretariat to oversee and coordinate ALS care and facilitate comprehensive data capture, efficient knowledge dissemination, and strategic system planning.

Recommendation 4: Ensure equitable ALS care in northern and rural Ontario 

Issue:  Many Ontarians living in northern and rural regions face unique challenges in health care access due to vast distances and limited health care infrastructure. This is the case for people living with ALS in northern and rural Ontario, as they must endure long journeys to attend appointments at one of the five ALS clinics located in Toronto, London, Hamilton, Kingston, and Ottawa, leading to disparities and barriers in access to care.

Solution: The development of a regional strategy to provide equitable and accessible ALS care in northern and rural Ontario ensures that people living with ALS receive timely care regardless of their geographic location. 

Our Advocacy Progress Highlights

Shortly after submitting the proposal to the Ontario Ministry of Health in June 2023, ALS Canada began advocating for the implementation of the Ontario Provincial ALS Program. 

• Government Meetings: Over the past several months, ALS Canada, along with community members, met with Ontario MPPs to discuss the implementation of the Ontario Provincial ALS Program, including the Minister of Health, Sylvia Jones, and the office of the Premier, Doug Ford. We will continue engaging with provincial elected officials, ministers, and other stakeholders to bring forward the realities of Ontarians living with ALS and the critical need for access to urgent care and support they require. 
• 2024 Ontario Pre-Budget Submission: ALS Canada submitted a written submission as part of Ontario’s 2024 Budget Consultations, urging the government to invest $6.6 million to implement the recommendations outlined in the Ontario Provincial ALS Program.  
• 2024 Ontario Pre-Budget Consultations: ALS Canada participated in six pre-budget public hearings held across Ontario by The Standing Committee on Finance and Economic Affairs (SCFEA) and local MPPs.  
• Queen’s Park Advocacy Day: On February 21, 2024, ALS Canada, joined by ALS community members, will host an advocacy day at Queen’s Park, where we will engage with MPPs, urging them to include the Ontario Provincial ALS Program as part of Budget 2024. Keep an eye on our social media channels for further updates and information on our Queen’s Park Advocacy Day. 

What you can do right now

Reach out to your elected official in Ontario, urging them to support the implementation of the Ontario Provincial ALS Program. To inform and empower your advocacy efforts, we have developed resources you can use to approach your MPP.

March 26, 2024 – Ontario’s 2024 Budget announcement, did not explicitly include a $6.6 million investment to implement the recommendations outlined in the Ontario Provincial ALS Program. We will continue our discussions with the government and relevant ministries to seek clarification.

We will continue providing relevant updates and ways to advocate on this blog post and our social media channels.

As we bid farewell to 2023, we want to take a moment to celebrate YOU. Your dedication throughout this month, and indeed the entire year, has been nothing short of inspirational. As a community, you have rallied together to show your generosity. And your giving spirit has not only uplifted the ALS community but has also propelled our mission forward.

As we embrace the possibilities of the upcoming year, we have a timely and essential reminder: The end-of-year CRA tax receipt deadline is mere days away!

Why is this momentous for you?

Immediate Impact: Your gift ensures we can continue to support Canadians affected by ALS, helping them today and striving for a future without ALS.

Tax Benefits: For many, the importance of the CRA tax receipt might not be immediately evident. By donating before midnight on December 31, you’re also positioning yourself for a 2023 tax benefit. It’s an excellent way to make your giving go even further. As an organization, ALS Canada is only able to issue these receipts if we receive your donation before the deadline, so don’t delay!

Act now: Seize this win-win opportunity. Donate before the end of the year and ensure you’re ready to benefit during the upcoming tax season.

Warm wishes for a joyful New Year,

Tammy Moore

Chief Executive Officer

ALS Society of Canada

A letter from Tammy Moore, ALS Canada’s Chief Executive Officer

Let me start by saying thank you.

Thank you for standing beside us throughout the year, driven by our shared vision: a future without ALS. Today, I want to share how much closer we are to turning this vision into a reality – and why we need your continued support to get us even closer.

First, let me express my immense gratitude to our entire donor community. Thanks to your support, we’ve made huge strides:

• Earlier Diagnoses: With projects like ReferALS, we’re paving the way for faster ALS diagnosis in Canada. This means timely access to treatments, clinical trials, and improved quality of life.
• Empowering Our Community: The ALS Canada Canadian ALS Learning Institute (CALI) has become a wealth of knowledge for countless Canadians, providing rich information and empowering them to share their stories and make change.
• A Milestone in Treatment: The approval of therapies is a testament to our relentless drive. With your help, we strive to ensure equitable access to treatment options for Canadians.

But our work isn’t finished yet

Nearly 4,000 Canadians are battling ALS daily. They rely on our services, information resources, and support groups to navigate this journey. They rely on our relentless advocacy for access to better treatment options, and they rely on our neverending drive to invest in groundbreaking research. With zero government funding, our lifeline is the collective strength and compassion of donors like you.

With the holidays approaching, I invite you to embrace the spirit of giving. Your donation fuels change, whether pushing for better care standards, funding transformative research, or empowering Canadians with information.

What your support means:

• Reinforces our pursuit of timely, affordable, and equitable access to therapies.
• Continues the critical research funding across Canada, moving us closer to more treatment options for ALS.
• Ignites impactful conversations with key government officials, emphasizing the urgency for research funding and policy shifts.
• And ultimately, it gets us another step closer to a future without ALS.

This December, let’s rally around families facing ALS. Your donation will make a difference in their lives today and fuel hope, pushing us closer to a world free of ALS.

Your generosity is also a vital reminder to people living with ALS right now that there is still so much they can do and that the ALS community is standing by their side.

Together, ALS Canada is able to be a beacon of hope for thousands of Canadians. Let’s shine brighter this December. The year may be coming to an end, but there’s so much we can still do. Together, let’s create a future without ALS.

With heartfelt gratitude,

Tammy Moore

Chief Executive Officer

Double your impact this GivingTuesday

When it comes to fundraising for ALS, next Tuesday (November 28) is the single most important day of the year, and to help us celebrate the day, we have an exciting announcement. Does this sound intriguing? Keep reading….

Every year, GivingTuesday gains more momentum in Canada as charities across the country rally alongside their donor communities to fund life-changing work. It’s a day for us to come together and support the causes closest to our hearts.

To help make the day a success, The Citrine Foundation of Canada has agreed to double every GivingTuesday donation you make, up to $45,000!

Throughout the day, we will be sending email reminders, plus stories from our community members that will remind you how much your donation truly helps real families across the country. If you’re not subscribed to receive emails from ALS Canada, you can do so here. Make sure you’re signed up so you don’t miss out next week.

Separately, we’re happy to announce that you can click here for early action to the GivingTuesday donation form. Even if you give today, we will make sure your donation is doubled and added toward our GivingTuesday goal.

Together, we can make this year’s GivingTuesday our most successful one yet! Can we count on you?

That’s a wrap! Our September events have come to an end at ALS Canada, and we can’t help but look back at how the community came out to ride and pull to end ALS. Both the ALS Canada Pull to End ALS and ALS Canada Revolution Ride bring us together in unique and challenging ways, demonstrating our commitment to raising awareness, honouring the people we’ve loved and lost, and ultimately helping change the future of ALS.

Pull to End ALS

The Pull to End ALS never fails to make an impact – while the shock of challenging yourself to pull a 42,000-lb transport truck is mighty, the energy everyone brings to the event with the shared goal of a future without ALS is mightier. As teams stepped up to pull, cheered on by friends and family, we were reminded that the weight of the challenge is nothing compared to the weight 3,000 Canadians living with ALS face every day. This year, the Pull to End ALS raised an incredible $189,000 and counting – funds that are critical for research investment, community-based support services, and advocacy initiatives! Check out the event’s energy and reflect on some of our favourite moments of the day by visiting the photo album.

Revolution Ride

The ALS community knows the power we hold together, and at this year’s Revolution Ride, we weren’t afraid to show it! Coming together in picturesque Dundas, Ontario, riders geared up to take on the new 12km route and the familiar 40km and 90km routes – riding to change what it means to receive an ALS diagnosis. You can look back at the magic of the day in our photo album – reflecting on the sunny skies and inspiring energy encompassing the event as we came together to make a difference. With the generous support of our riders, those who donated, and the event volunteer committee, the event was an outstanding success, raising $280,000 and going – all to help in our work to create a future without ALS!

ALS Canada would like to thank everyone who participated and supported the Pull to End ALS and Revolution Ride. This September was a reminder that together, we are stronger as we work toward our shared cause – changing the reality of receiving an ALS diagnosis. Though the year isn’t over yet – stay tuned to our social channels to see what exciting events are happening next!