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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.
Learn more about our work in 2023 by exploring our latest annual report.
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.
The ALS Society of Canada (ALS Canada) is pleased to welcome Dr. Chantelle F. Sephton from Quebec and Craig Storey from Prince Edward Island to our Board of Directors. ALS Canada’s Board of Directors is comprised of volunteers from diverse backgrounds who have come together with a common goal of ensuring ALS Canada is well-governed, and donor dollars are maximized to serve our charitable purpose.
Dr. Chantelle F. Sephton received her Bachelor of Science in Biochemistry from the University of Saskatchewan in Saskatoon and her PhD in Psychiatry from the University of Saskatchewan. She completed her postdoctoral studies at the University of Texas (UT) Southwestern Medical Center at Dallas under the mentorship of Dr. Gang Yu in the Department of Neuroscience. She started her lab at Université Laval in the CERVO Brain Research Centre in 2014 and is currently an Associate Professor in the department of psychiatry and neuroscience.
Craig Storey holds a Bachelor of Engineering (Industrial) from Dalhousie University (formerly Technical University of Nova Scotia), ICD.D, Directors Education Program (DEP) from Institute of Corporate Directors & Rotman School of Business and an Immersion Certificate from Cégep de Ste. Foy, Quebec City, Quebec. He has spent his career building stronger companies, typically in the Tech sector. Craig has extensive expertise in business development, mergers and acquisitions, product management, sales, marketing and channel management, enterprise software/SaaS, customer service, and change management.
We asked our newest appointees to share a bit about their connection to the cause and what they hope to bring to the ALS community as a member of the Board.
Dr. Sephton:I am a research scientist studying the underlying cause of ALS for more than 15 years. This has been a rewarding and challenging endeavour, and I am strongly encouraged by the collective contributions of my team and my colleagues toward a better understanding of the disease. We need to continue our collective search for an understanding of ALS and push the envelope to find better treatment options and a cure. Part of this pursuit involves other levels of contribution to the ALS community and to ALS Canada. As a member of the ALS Canada Board of Directors, I hope to contribute to the organization and its betterment by acting as an advocate for the ALS research community. By doing so, I hope to ensure that ALS research in Canada is flourishing and continues to advance our understanding of ALS, which will lead to new therapeutic approaches to treat and cure the disease.
Craig: I have very close friends who have been impacted by ALS, which led me to become a member of the ALS Canada Board of Directors. If I could help prevent others from experiencing what they have and are continuing to experience, that would be a great win. In addition, I believe if we each try to make tomorrow better than today, we will leave this world a better place than we found it. I also wanted to put my effort into an area that had a larger impact. ALS Canada is a national charity, service, and research organization that ticked many boxes for me to want to be involved.
Our entire Board is guided by the challenges and complexities of living with ALS, and its approach to governance is rooted in working together to improve the lives of people affected by ALS through support, advocacy, and investment in research for a future without ALS.
We welcome Chantelle and Craig and look forward to working with them as members of our Board of Directors.
With admiration and gratitude, the ALS Society of Canada (ALS Canada) acknowledges the incredible contribution of our Board member, Dr. Christine Vande Velde, whose term has come to an end.
Dr. Vande Velde leaves her position on the Board and Chair of the Scientific & Medical Advisory Council, after almost six years. A Professor in the Department of Neurosciences at the Université de Montréal and Université de Montréal Hospital Research Center (CRCHUM), Dr. Vande Velde obtained her PhD in Biochemistry from the University of Manitoba and pursued postdoctoral studies at the University of California, San Diego/Ludwig Institute where she developed an expertise in ALS.
In 2007, Dr. Vande Velde established her laboratory to study novel pathways and genes in ALS pathogenesis to understand biologically valid therapeutic targets and biomarkers. Her work is currently funded by CIHR, NSERC, ALS Canada-Brain Canada, and the US Department of Defence. She has served on several grant review panels both nationally and internationally. Most recently, she was appointed as Scientific Director at the Robert Packard Center for ALS Research.
When asked how she got involved with the Board, she credits her close colleague and mentor, Dr. Heather Durham, as the person who got her involved. “She promised me that I would learn a lot and it would be one of the most rewarding things I would do in my career,” says Dr. Vande Velde. “She was right.”
“During my time on the Board, I learned that the work of ALS Canada extends far beyond providing funds for research grants. The organization provides critical services to people in Ontario, as well as playing a national role in advocacy and information sharing/brokering, and in recent years, influencing the global ALS effort in all domains including research, community services, and advocacy.”
She says of her experience as a whole, “It’s not a cushy job – I worked. But honestly, I think I got way more out of it than I put in. I learned a ton about governance, strategic planning, finances, working through challenging conversations, always having an eye on the prize (i.e., staying on mission!) and thinking a few steps ahead of where one currently is. I am grateful to have had this opportunity to work with so many dedicated fellow Board members and the ALS Canada team. My time on the Board changed the way I think about my science and how I run my own team.”
Thank you to Dr. Vande Velde for your leadership, insights, and commitment to the cause. You have been influential in ensuring we continue to uphold our mission while always keeping the person living with ALS at the centre of our work.
We appreciate your many and varied contributions to creating real and meaningful change for people affected by ALS and know your work doesn’t stop here. We can’t wait to see what comes next for you.
The ALS Society of Canada (ALS Canada) is excited to welcome Dr. Leslie Green, Jude Groves, and Kris Noakes to our Board of Directors. Comprised of leadership volunteers with a variety of backgrounds and expertise, our Board ensures ALS Canada is well-governed and donor dollars are maximized to serve our charitable purpose.
Dr. Leslie (Les) Green is Professor Emeritus in the Law Faculty at Queen’s University, and the University of Oxford. A widely published expert in human rights, ethics, and constitutional theory, he has served on the boards of educational and cultural organizations in Canada and the UK. Les is a resident of Toronto, and lives with ALS. Having been born in a tiny village in the West of Scotland, a few years ago, he decided to go ‘back to school’ and study Scottish Gaelic, which he spoke as a child but later lost. Continuing his education as a student has given him a new perspective to his teaching to be able to sit (virtually) in the students’ seats again.
Jude Groves has several years’ experience in health and safety within the transportation industry taking on various leadership roles. He is currently the Vice President, Safety, Compliance, Injury Prevention and Training for the Kenan Advantage Group. Jude has also been a part of a number of boards, committees, and working groups including Chair of the Board for the Alberta Motor Transport Association. Jude lives in Alberta and has two young children. He enjoys travelling with his wife and exploring both on and off the beaten path around Canada and beyond, capturing moments along the way with his photography.
Kris Noakes is a citizen of the Anishinabek Nation and a member of Nipissing First Nation and a community advocate at the municipal, provincial, and federal levels. Her diverse experience includes leading a NGO, building Indigenous services in the Greater Toronto Area (GTA). Kris has supported community initiatives for the City of Mississauga and City of Brampton’s Diversity and Inclusion Advisory Committees and has served as a member of the Region of Peel’s Homelessness Partnering Strategy Community Advisory Board (CAB), the First Nation, Métis and Inuit Advisory Circle for the Peel District School Board (PDSB), the Toronto Area Education Leads for the Indigenous Education Office of Ministry of Education and as a Director for Art Gallery of Mississauga.
Kris currently serves as a member of the Board of Directors and Treasurer for the Hamilton Community Legal Clinic and an appointed member of the Federal Judicial Advisory Committee for the GTA, she is also a member of ALS Canada’s Revolution Ride Committee and a member of 100 Women Who Care. Outside of volunteering, Kris spends time with family including her two dogs. ALS has greatly impacted Kris and her family, losing previous generations, they continue to live with the disease and a hope for a future without ALS for everyone.
We asked our newest appointees to share a bit about their connection to the cause and what they hope to bring to the ALS community as part of the Board of Directors.
Dr. Green: I have enormous admiration for all the work ALS Canada does, from funding research in basic science to supporting caregivers and clients who are living—as I am—with ALS. I have been enormously fortunate in life, and I am now able to put time and energy into an organization that deserves as much support as it gives to others. I know this first-hand. Within a couple of weeks of my own diagnosis, ALS Canada was there for me, and it still is.
I am a law professor by trade, specializing in human rights and ethics. These issues come up in almost every aspect of the work ALS Canada does: from how research is conducted, to how drugs are regulated and how healthcare is provided. The Board is a talented and diverse one; I hope my own perspective might complement the fantastic resources it can already draw on.
Jude: In late 2021 my father was diagnosed with ALS. The personal impacts ALS has had on our family is what led me to volunteer, asking what I could do to support an organization that has been pivotal in supporting our family through this trying and tiring journey.
This is an opportunity to give back and to put my experience and education to use to support creating the opportunities to better research, better support, and most importantly improve the quality of life for people living with ALS and their families. ALS Canada is such a foundational group in supporting the fight against this devastating disease.
Kris: As a patient and from a family that has been devastated by ALS, it has not been easy navigating the healthcare system. Through ALS Canada, I was connected to the services and supports I needed, I couldn’t be more honoured to join this organization and the dedicated people that support the ALS community and research. I hope I can help in advocacy and building awareness of this disease.
Our entire Board is guided by the challenges and complexities of living with ALS, and its approach to governance is rooted in working together to improve the lives of people affected by ALS through support, advocacy, and investment in research for a future without ALS.
We welcome Jude, Les, and Kris and look forward to working with them as members of our Board of Directors.
With gratitude and appreciation, the ALS Society of Canada (ALS Canada) acknowledges the significant contributions of four Board members whose terms have come to an end. Thank you to Norma Beauchamp, Catherine Bélanger, Josette Melanson, and Jim Mitrakos for your leadership, insights, and dedication.
Norma came to the volunteer Board three years ago bringing with her, her experience as the former President and Chief Executive Officer of Cystic Fibrosis Canada. Having held senior leadership experience in Canada and globally, including executive positions at Bayer Inc. and Sanofi Canada, Norma played an integral role in governance and recruitment. When asked what moved her to join the Board of Directors she shared that Tammy Moore, ALS Canada’s CEO, inspired her to join because of her passionate and caring nature. She is grateful for the ALS Canada experience and for the opportunity to learn more about ALS, the impact on families, and the need for innovative therapies.
With a long history of community engagement and supporting various non-profit and charitable organizations, Catherine came to the Board in 2020 having been a champion for the ALS cause since 2015 when her late husband, the Hon. Mauril Bélanger was diagnosed with ALS shortly after being re-elected as MP for Ottawa—Vanier. Her time on the Board included work as part of the Advocacy Committee and supporting fundraising initiatives. Linking the immediate needs of the ALS community with ALS Canada’s long-term focus was something Catherine took great care in focusing on during her time with the Board. Having been an ALS caregiver, Catherine’s perspective and contributions to the Board have been invaluable.
Josette, a strategic senior executive with cross-functional experience in finance and technology, contributed to the Board throughout her nine-year term in many ways including a previous role as Chair of the Board and Chair of the Finance & Audit Committee in addition to her work with the provincial ALS Societies. Josette is a decisive leader and brought with her an understanding for process that helped guide the Board in several decision-making opportunities. Her time with the Board included that of the Ice Bucket Challenge in 2014. Joining the ALS Canada Board of Directors was a way for Josette to give back she says, “I learned how important developing a business strategy is and the alignment to operational plans.” And although she did not have a family member affected by ALS, she says, “I always focused our decisions on the person living with ALS and their caregivers. It’s been a rewarding experience to work with a professional organization and board.”
With Jim’s CPA, CA experience he helped guide the organization in its financial processes, risk assessment and mitigation planning, and budgeting as part of the finance and audit committee. Jim joined the Board in September 2019 and brought with him his experience as the President and Chief Financial Officer of Modu-Loc Fence Rentals, LP. He came to the Board having known friends and work colleagues who had been touched by ALS. “I learned how truly committed and passionate the ALS Staff, Board, and volunteer community as a whole, are at living the notion of ‘ALS Doesn’t Stop Neither Will We,’” he says. “It was truly inspirational, driving me to want to do more and more to assist in doing all that I could, to change ALS forever.”
Each of these departing Board members were influential in ensuring we continued to uphold our mission while always keeping the person living with ALS at the centre of our work.
Thank you, Norma, Catherine, Josette, and Jim, for your many and varied contributions to create real and meaningful change for people affected by ALS.
We are pleased to extend a warm welcome to Alyssa Barry, Ken Chan, Elizabeth Gandolfi and Dr. Angela Genge who recently joined the ALS Canada Board of Directors.
Alyssa Barry became connected to the ALS community when her uncle was diagnosed with ALS. In addition to a personal connected to the cause, she brings to her role as an ALS Canada Board Member more than 15 years of communications and capital markets experience, specializing in organizational management, corporate governance, business operations, and strategic planning. Alyssa is Head of Strategy – Operations and Communications and Corporate Secretary of Artis REIT. Prior to joining Artis REIT, Alyssa held leadership roles at Sandpiper Group, a real estate private equity firm she helped found, and Amica Mature Lifestyles Inc., where she developed and executed the company’s IR strategy.
Ken Chan lost his father to ALS 20 years ago. In addition to his personal connection to the cause he brings leadership experience in the public, private and non-profit sectors, including as an Assistant Deputy Minister with the Ontario Government, Director of Public Affairs at Vertex Pharmaceuticals and Vice President of Advocacy, Research and Healthcare at Cystic Fibrosis Canada. He has worked internationally at the UK Department for Business and at London City Hall. As a seasoned director with the ICD.D designation granted by the Institute of Corporate Directors, Ken has served on boards in the financial, health and education sectors.
Elizabeth Gandolfi knows firsthand the challenges faced by families living with ALS, having lost her father to the disease in April 2020 at the start of the COVID-19 pandemic. Currently Vice President, Insurance for the Canadian Bank at Scotiabank, Elizabeth is a passionate leader, mentor and coach with a diverse background in Financial Services. Throughout her career, she has led and participated in enterprise-wide business improvement and growth initiatives and successfully put in place new organizational structures, delivery models, and program improvements to drive superior business performance, as well as stronger customer and employee experiences.
A world-leading neurologist and clinician, Dr. Angela Genge has championed the need for ALS clinical trials in Canada. She is passionate about the cause and elevating Canada’s ALS leadership in the best interest of people living with the disease. Dr. Genge is currently the Director of the Clinical Research Unit at the Neuro, Director of the ALS Clinical Program and Multidisciplinary Clinic, and a neuromuscular neurologist. For her exceptional care and compassion towards ALS patients and her tireless involvement in clinical trial development and dedication to clinical research, she received the prestigious Forbes Norris Award at the 2018 International Symposium on ALS/MND. She previously served on ALS Canada’s Board of Directors from 2014 to 2020.
We are also pleased to announce that Patrick Nelson has been appointed Chair of the Board. Having lost his mother to ALS in 2014, Patrick understands how the disease affects families. His lived experience with ALS is complemented by professional experience in government relations and communications. He is currently a Principal and Partner at Santis Health and has served on the ALS Canada Board since 2017.
Our volunteer Board understands the challenges and complexities of ALS, and the urgent need to change the status quo. Their strategic guidance and governance lens ensures the organization is carrying out its work with efficiency and accountability, stewarding donor dollars wisely and in impactful ways that will make a difference to the ALS community aligned with our strategic plan. Thank you for your generous contribution of time and talent.
With deep appreciation for their contributions of time and expertise, we thank Carol Cottrill, Daniel Riverso and Vincent Quinn whose terms on the ALS Canada Board of Directors have come to an end, and Josette Melanson who becomes Past Chair after serving as Chair of the Board since 2019.
Appointed to the Board in 2017, Carol Cottrill brought a unique historical perspective, having previously served as Executive Director of the ALS Society of New Brunswick. With expertise in communications, public and media relations Carol she is currently the Executive Director of Laubach Literacy New Brunswick.
Daniel Riverso was appointed to the Board in 2016 and served as a member of the Finance and Audit Committee, contributing expertise gained over more than 15 years of investment and financial management experience including his current role as Director, Chief Investment officer and Chief Compliance Officer of Continuum Private Wealth Partners Inc. He has been a strong ambassador for spreading awareness of ALS and a committed fundraiser through the ALS Canada Plane Pull, Walk to End ALS and other initiatives.
Diagnosed with ALS in 2015, Vincent Quinn joined the ALS Canada Board of Directors in 2016. His volunteer contributions span many areas of ALS Canada’s mandate: he has served on the Client Services Advisory Committee, as a volunteer Walk Coordinator for the Walk to End ALS in Simcoe County, and as an observer of the 2020 Discovery Grants peer review process. A long-time altruist, Vince has dedicated his career to supporting others, working with people living with disabilities, managing social justice issues for homeless youth and adults, and facilitating support groups for people who have lost loved ones to suicide.
Josette Melanson has provided governance leadership and oversight at a significant time in the evolution of the organization and the ALS landscape more broadly. Milestones since she joined the Board in 2013 include the Ice Bucket Challenge, the introduction of ALS Canada’s 2018-23 strategic plan and Health Canada’s approval of Radicava.
Thank you Carol, Daniel, Vincent and Josette for so generously giving of your time and for the thoughtful expertise you contributed throughout your terms. We are ever grateful for your commitment to our shared cause.
In honour of National Volunteer Week (NVW), we are reflecting on and celebrating the strength and diversity of ALS Canada’s volunteer community through this year’s theme of the value of one, the power of many. The theme represents the power that individuals can have when they come together as a community to work toward a common goal – in our case – toward a future without ALS.
Although 2020 was a challenging year in many ways, we continue to be amazed by our volunteer community’s innovation and resiliency. From research to advocacy, pivoting to virtual events and fundraising, our volunteers stepped up to donate their time to help people and families living with ALS in Ontario during this unprecedented time.
No one individual alone can support the needs of everyone living with ALS. However, together as a community, we can bring together diverse ideas and mindsets, creating change together. Last year, ALS Canada volunteers collectively donated more than 9600 hours of their time to our shared cause. Here are just a few of the ways that our volunteers provided leadership:
Walk Coordinators and community organizers played a huge role in the success of our first ever Virtual Walk to End ALS, using their skills to support event planning, fundraising and securing sponsorships.
Board and Advisory Council members provided strategic insights and advice to our organization, keeping us accountable to the needs of the ALS community.
Speakers, advocates and awareness volunteers shared their personal experiences with ALS to help others understand the realities of their experience and the urgent need for action.
On behalf of ALS Canada, we would like to thank all of our volunteers for their continued support, time, and talents. We look forward to innovating, meeting new challenges, and celebrating our successes as a community in 2021.
ALS Canada is pleased to welcome Catherine Bélanger, Richard Ellis and Lisa Flaifel to our Board of Directors. Comprised of senior leadership volunteers, our Board ensures ALS Canada is well-governed and donor dollars are maximized to serve our charitable purpose.
Like their fellow Board members, our three newest appointees bring expertise from a range of professional areas and a shared passion for the ALS cause:
Catherine Bélanger has a long history of community engagement and supporting various non-profit and charitable organizations. Catherine has been a champion for the ALS cause since 2015 when her late husband, the Hon. Mauril Bélanger was diagnosed with ALS shortly after being re-elected as MP for Ottawa—Vanier. Her consulting business, KatiCorp Inc., leverages her many years of experience as a public service executive where she worked in policy development, strategic planning and strategic communications. She has been a panellist, presenter and guest speaker at several national and international conferences and recently participated in ALS Canada’s Hill Day in Ottawa.
Richard Ellis is Past Chairman and current member of the Board of Directors of Ronald McDonald House Charities of Canada as well as a former Advisory Board member of the Canadian Foundation for AIDS Research, member of the Governor General’s Performing Arts Awards National Committee, and Co-chair of The Sandbox Project. He has supported the ALS cause for many years after his best friend, Cathy, died of the disease at the age of 40. Richard’s 30 years of international business experience have included leadership roles in communications, public affairs, government relations and issues management. In 2019 he established Ellis Strategy Group, where he specializes in executive coaching, reputation management, issues management, and leadership development.
Lisa Flaifel lost both her father and brother-in-law to ALS within a five-year span. She says the experience has had a transformative impact on her, as it brought her family together and taught her about courage and humility. Lisa is Vice-President General Medicine at Bayer and has experience in strategic brand marketing, sales and team leadership. Throughout her career, she has been a strategic cross-functional partner who has supported organizations in creating solutions for complex business problems and translating corporate visions into tangible team goals.
We are also pleased to announce that Patrick Nelson, who joined the Board in 2017, has been appointed Vice-Chair. Having lost his mother to ALS in 2014, Patrick understands firsthand how the disease affects families. He brings this personal experience, along with professional expertise in government relations, communications and governance at public affairs consultancy Santis Health, where he is a Principal, to his leadership role on the Board.
Our entire Board is guided by the challenges and complexities of living with ALS, and its approach to governance is rooted in working together to improve the lives of people affected by ALS through support, advocacy and investment in research for a future without ALS.
We welcome Catherine, Richard and Lisa and look forward to working with them as members of our Board of Directors.
With great appreciation, ALS Canada acknowledges the significant contributions of three Board members whose terms have come to an end, even as their commitment to the ALS cause continues. Thank you to Ron Foerster, Dr. Angela Genge and Patrick Merz for your gifts of leadership, time and expertise.
Dr. Genge and Patrick were both appointed to the volunteer Board in 2014, just before the ALS Ice Bucket Challenge resulted in unprecedented awareness and funds for the cause, while Ron joined in 2015 and served as Chair from 2017 to 2019.
In all three instances, their leadership was instrumental in ensuring effective use of the funds raised through the Ice Bucket Challenge in order to have the greatest impact, and in moving the organization to a renewed mission grounded in the needs of the ALS community and in anticipation of a day when more treatments will be available as a result of past investments in research. Each has leveraged personal and professional connections to the cause with a focus on creating a different reality for people affected by ALS.
Ron’s legal expertise in governance related issues combined with the personal experience of his mother’s ALS diagnosis benefited ALS Canada through his significant contributions to the development of our 2018-23 strategic plan, with a focus on good governance and maximum impact for the people we serve. He also regularly flexed his fundraising muscle through participation in the ALS Canada Plane Pull and other events.
A world-leading neurologist and clinician, Dr. Genge has championed the need for ALS clinical trials in Canada. She is passionate about the cause and about elevating Canada’s ALS leadership in the best interest of people living with the disease. For her exceptional care and compassion towards ALS patients as well as her tireless involvement in clinical trial development and dedication to clinical research, she received the prestigious Forbes Norris Award at the 2018 International Symposium on ALS/MND.
Another member of the Board with a personal connection to ALS, Patrick brought expertise in accounting as a long-standing member of the finance and audit committee, which ensures we are fulfilling our financial responsibilities including reporting, controls and audits. Considering ALS Canada’s national mandate for research funding and federal advocacy, he also contributed a western Canada lens as a resident of Alberta.
Thank you Ron, Dr. Genge and Patrick for your many and varied contributions to create real and meaningful change for people affected by ALS.
ALS doesn’t stop and neither will we. Even during these unprecedented times, ALS Society of Canada volunteers continue to give their time and skills to support people and families living with ALS.
Over the past week, in recognition and celebration of National Volunteer Week 2020 #NVW2020, you’ve had the chance to get to know some of our amazing volunteers as they gave you a peek into what they do, what motivates and inspires them, and the memorable moments that stand out for them. Our volunteers are central to the work we do, so in addition to sending all of them a big thank you, we wanted to share just a few of the many ways they make a difference.
In 2019, ALS Canada volunteers gave more than 9,500 hours of their time to support our shared cause. The time and skills given by our volunteers play a big role in helping to create a future without ALS. Here are just a few of the ways that our volunteers provide leadership:
Walk Coordinators and community event organizers share their knowledge, skills and expertise to support event planning, fundraising, securing sponsorships, and seeking out new opportunities in the community.
Board and Advisory Council members provide strategic leadership and oversight, keeping the organization accountable in meeting its objectives and providing thoughtful direction with the needs of the ALS community in mind.
Speakers, advocates and awareness volunteers share their personal experiences to help others understand the realities of living with ALS and the need for things to be different.
Office volunteers support projects like conducting phone client satisfaction surveys, collecting feedback to ensure people living with ALS are well-supported, and mailing of tax receipts.
As a result of the COVID-19 pandemic, 2020 has already proven to be challenging for the ALS community and the world, however, we continue to be amazed and humbled by the resiliency of our volunteer community, which has stepped up with enthusiasm by sharing new ideas and continuing to donate their time and skills.
As we wrap up National Volunteer Week, we thank all of our volunteers from the bottom of our hearts for everything they do and all that they give in support of the ALS cause.
In celebration of 2019 National Volunteer Week #NVW2019, you’ve heard from volunteers who support the work of ALS Canada in different ways. You’ve read about what they do, why they do it and about memorable experiences they’ve made along the way.
Whether you are fundraising, creating awareness, providing event support or working behind the scenes in so many other ways – your contributions make an immediate impact. Because of you, the ALS community’s voice is amplified. Because of you, more resources can be redirected to raising funds. And because of you, hope for a future without ALS is possible.
Did you know that in 2018, ALS Canada volunteers contributed an estimated 9,800 hours? That’s close to the equivalent of five full time staff positions!
Wow, right? To every single one of you who give your time in support of the ALS cause, thank you.
We’re always looking to connect with passionate people from communities across Ontario who want to use their skills or time to make a difference.
Learn more about opportunities to get involved with ALS Canada.
As a charitable organization, ALS Canada relies on the time and talents of dedicated volunteers in so many ways. Each one plays a vital role in helping us achieve a future without ALS. For the final day of National Volunteer Week, we want to share a message from ALS Canada’s CEO, Tammy Moore, to the thousands of volunteers who help us in our shared cause.
Hi, I’m Tammy Moore, the CEO of the ALS Society of Canada. I’m here on National Volunteer Week to thank the many volunteers who help our organization to do the critical work that we do: supporting people living with ALS here in Ontario, funding the much-needed research to make ALS a treatable disease, and helping us with our advocacy efforts and sharing information.
So on National Volunteer Week, I want to recognize people like Beth who come into our office week after week, helping us with administrative tasks. Or from our Board, helping us to set strategic direction and leadership for our organization. Or those many, many volunteers who are there on day-of at events, helping to make the greatest experience possible for everyone on-site. And of course, raising those much-needed funds for our organization.
So on National Volunteer Week, I’d like to say a heartfelt thank you, from us to you, in helping to create a future without ALS.
Aaliyah Gallant-Barons, Niko Kremmydiotis, and Cole Hayward
When a disease like ALS strikes, people often rally around their loved ones and resolve to make a difference. The realities of the disease are such that every member of the family is impacted — including children and youth — inspiring them to take action for a future without ALS.
ALS Canada is fortunate to have volunteers who contribute to the organization in meaningful ways, which includes donating their time and talents to fundraising for research and community-based support. The contributions of young fundraisers in communities across the province do not go unnoticed. For National Volunteer Week, we are sharing the stories of three young fundraisers for ALS Canada: Aaliyah Gallant-Barons, Niko Kremmydiotis, and Cole Hayward.
Aaliyah Gallant-Barons
Ten-year-old Aaliyah Gallant-Barons is one of the youngest fundraisers at her local WALK for ALS in London, Ontario. In fact, in 2017 she was the second largest WALK for ALS fundraiser in the community, raising just under $10,000. Over the last three years, she has raised over $20,000 for ALS research and community-based support, all in memory of her grandfather, Ed Rossol.
“My Papa was so brave and dealt with ALS with dignity, courage, determination and his great sense of humour,” Aaliyah says. “I loved him very much and he loved me. He was my hero!”
To reach her goal for the WALK for ALS, Aaliyah, at the age of 7, converted her Papa’s garden shed into an art studio and sold her Art for ALS. The following year she had a garage sale and has written a song for a music fundraiser using a guitar her grandfather gave her. This year, she plans on developing a virtual lemonade stand video in hopes of reaching corporate donors to help support her fundraising efforts.
“Every night I think about my Papa and I always say to myself that I will reach my goals and find a cure for ALS to help others and their loved ones. I believe one day we will find a cure.”
For all of her efforts, Aaliyah was presented with a Canada 150 Award in the category of youth/students that have made extraordinary contributions in their community through responsible actions, leadership and innovative thinking.
“Aaliyah is an amazing, dedicated girl,” says Charlene Spector, ALS Canada Regional Manager for South West and Grey-Bruce. “The love of her grandpa is an obvious drive to her success.”
Niko Kremmydiotis
In lieu of birthday gifts, eight-year-old Niko started fundraising for ALS Canada in memory of his grandmother, Yiayia Asimina. His initial goal was to raise at least $300 — but in just four months, he raised a a little over $2,100.
Age does not have to be a barrier to fundraising and making an impact. Along with completing his own version of the Ice Bucket Challenge, Niko also presented his fundraising mission to his class and teachers, and set up a station at a local fitness studio to sell bookmarks he created with the help of his mom and dad. His fundraising efforts even travelled with him over the summer, as he brought his bookmarks on vacation to sell to family and friends.
“This has been such a learning experience for him and for all of us,” shares his mother, Katerina. “Fundraising for ALS Canada has forced him to step out of his comfort zone, discovering that he could do a lot more than what he gave himself credit for. We are so proud of him!”
Cole Hayward
When Cole Hayward was just two years old, he lost his father, Jake, to ALS. At such a young age, he started walking with “Team Hayward” at the London WALK for ALS – it was from that point forward that ALS became his cause of choice and he started fundraising to make a difference for others living with the disease.
Five years ago, after the WALK for ALS, Cole decided that he wanted to host his own fundraiser, doing something he loved to do: skateboarding. Thus, Sk8 for ALS (a skateboarding competition to raise awareness and funds for ALS) was born in memory of Jake Hayward.
At 15 years old, Cole has raised just under $5,000 for ALS Canada through his unique fundraising event, something that has brought many young people together to support the cause.
“Everyone in the community has been so supportive, but my family and friends have supported me the most,” he says. “My biggest tip to other young fundraisers is to get as many people involved as possible, especially with sponsorships and advertising. Figure out what you want to achieve and make it happen!”
Of course, Cole’s strongest motivation has been his father’s memory, but also the desire to make a difference for others who are going through what he and his family did. Both he and his mother, Stephanie, are committed to raising money for ALS in any way they can.
“This year marks the fifth anniversary of Sk8 for ALS,” says Stephanie. “And we are working to make this our biggest and most successful event yet.”
April 15-21 is National Volunteer Week. Each day this week, we are sharing the story of a different ALS Canada volunteer who dedicates their time and talents to creating a future without ALS. Learn more about how you can get involved.
Niagara WALK for ALS
Today we are profiling two volunteers from the Niagara WALK for ALS: Debbie Damario and Ashley Dunseith.
Both Debbie and Ashley have lost a loved one to ALS. Now, they dedicate their time to the Niagara WALK for ALS as a way to ensure funds are raised for a future without ALS.
Watch this video for more on the personal experiences that brought them to the WALK for ALS.
Why did you get involved in the WALK for ALS? Do you have a personal connection to the cause?
Debbie: My connection to ALS is my fiancé passed away from ALS five years ago in October. Before he passed away, I promised him that I would not stop fighting until they found a treatment or a cure. So, that’s what I do.
Ashley: The reason I got involved in ALS is because I lost my grandfather to ALS, actually just six days before the 2015 WALK. So we rallied together, pulled our team together, and we’ve walked ever since and will continue to WALK until we find a cure for ALS.
What are some of your roles as WALK for ALS Coordinators and committee members?
Ashley: I started as a team captain and rallied my family together and then I moved into the committee where I took on various roles and then I became a Coordinator for the 2017 WALK. For my first year, it was amazing. Again, no words. I bounce around, I kind of coordinate where everyone goes, kind of find where their strong suits are and then I bounce and I talk to families and I thank them for coming and I just try and get my face out there, just to know that I’m thinking about them and I’m appreciative of them coming out and again jumping around to make sure all the volunteers have what they need and everything’s good, kinda smoothing out anything along the way behind the scenes.
What would you consider to be the most rewarding parts about being a WALK Coordinator and committee member?
Debbie: It’s just all rewarding. From the meetings that we go to every month… I can go to bed at night and know that I have done a great thing. Whether I’ve just sat there and wrote notes, it doesn’t matter. My presence, you know, I feel like it’s all rewarding. Again, there’s no words. A lot of this has really no words, right? You can’t even describe it. It’s something that I never thought I would ever be a part of and, unfortunately, fate made me a part of it and that’s it, it’s just rewarding! I have no favourite part. It’s just all a package.
Ashley: The most rewarding part about being involved in the WALK in general is seeing my family come together and that was really the driving force that brought me into this. But seeing all of the families that come together and the smiles just to be able to participate, the support of just helping their family member that has ALS actually be able to join the WALK with us. I would say that is definitely the most rewarding.
York Region WALK for ALS
For day two of National Volunteer Week, we’re introducing you to Judith Malvern, a committee member for the York Region WALK for ALS. When her sister passed away from ALS, Judith felt she needed a way to pay it forward in her sister’s memory. She started volunteering with the WALK for ALS so that other people and families living with ALS have the equipment and services they so desperately need.
Watch this video to learn more about Judith and her ALS story.
Why did you get involved in the WALK for ALS? Do you have a personal connection to the cause?
My name is Judith Malvern and I’m a volunteer with the York Region WALK. I got involved in the ALS WALK because my sister was diagnosed with ALS and I saw and I used all those wheelchairs, lifts and walkers and every single piece makes such a difference to the quality of life and the mobility…to extend it. So, when she passed, the only way to pay it forward, as there was really nothing else I could do for her, was to start fundraising to know that someone else would have that equipment in her honour. And so our whole family across the country are involved and I’m just honoured to be part of all this.
What is your favourite part about the WALK for ALS in YOUR community?
It’s amazing, I’ve been in volunteer work my entire life and there are the best people involved with the ALS fundraisers: loving, caring people who give 150 per cent.
Ron Foerster, Chair of the ALS Canada Board of Directors
As a charitable organization, ALS Canada is fortunate to have a legion of volunteers who dedicate their time and talents to our shared cause. Each one of these volunteers has a unique story and experience that brought them to the organization, but they all share one thing in common: the desire to contribute to a future without ALS.
While volunteering is not typically something people seek recognition for doing, National Volunteer Week provides an opportunity to acknowledge each and every one of the volunteers who make the work of ALS Canada possible – whether contributing on the Board or an Advisory Council, planning and executing the WALK for ALS, speaking out as ALS Canada ambassadors, helping a fundraising event to run smoothly or creating new fundraising initiatives that mobilize the community.
Since joining the Board of Directors of ALS Canada, where he is a volunteer himself, Chair Ron Foerster has been part of many events where volunteers play a key role — such as the Bombardier Plane Pull and the WALK for ALS. Having had the opportunity to observe many of our volunteers in action, Ron Foerster, Chair of the Board of Directors, has noticed they all have one thing in common:
“In light of the many challenges that face those affected by ALS, I am both grateful and impressed by a characteristic shared by all ALS Canada’s volunteers that I have witnessed – they never give up; it’s not how they operate,” he says. “And that tenacity engenders a real sense of hope – and hope is a critical tool in fighting this terrible disease. So I want to thank all the volunteers who have dedicated their time, talents and skills to the organization. Thank you for all that you do.”
Ron’s own volunteer contribution to ALS Canada was sparked by his personal experience with ALS: he became involved with the organization following his mother’s ALS diagnosis.
“When my mother was living with the disease, ALS Canada was the lifeline that kept us afloat,” he says. “I always felt a responsibility to give back. Volunteering on the Board of Directors is my way of doing that. I feel that good governance is the cornerstone of a successful charitable organization so I volunteer my time to ensuring its success.”
Ron stands behind the volunteer leaders that sustain the organization and believes they bring a sense of hope for a future without ALS.
“Like many others, when I was first introduced to ALS, the main feeling I remember having was one of hopelessness,” he says. “Today, the most rewarding thing about my role on the Board is seeing the skills, dedication and tenacity of all people involved in the organization: the clients, caregivers, researchers, clinicians, ALS Canada staff and all volunteers, from the Board of Directors to the WALK committees – all working together to defeat that sense of hopelessness.”
No matter the capacity, each and every one of ALS Canada’s volunteers is vital to the organization. As we move toward a future without ALS, volunteer roles may change, but their importance will never fade.
April 15-21 is National Volunteer Week. Each day this week, we are sharing the story of a different ALS Canada volunteer who dedicates their time and talents to creating a future without ALS. Learn more about how you can get involved.
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To reach her goal for the WALK for ALS, Aaliyah, at the age of 7, converted her Papa’s garden shed into an art studio and sold her Art for ALS. The following year she had a garage sale and has written a song for a music fundraiser using a guitar her grandfather gave her. This year, she plans on developing a virtual lemonade stand video in hopes of reaching corporate donors to help support her fundraising efforts.
Challenge, Niko also presented his fundraising mission to his class and teachers, and set up a station at a local fitness studio to sell bookmarks he created with the help of his mom and dad. His fundraising efforts even travelled with him over the summer, as he brought his bookmarks on vacation to sell to family and friends.
Five years ago, after the WALK for ALS, Cole decided that he wanted to host his own fundraiser, doing something he loved to do: skateboarding. Thus, Sk8 for ALS (a skateboarding competition to raise awareness and funds for ALS) was born in memory of Jake Hayward.
Ron’s own volunteer contribution to ALS Canada was sparked by his personal experience with ALS: he became involved with the organization following his mother’s ALS diagnosis.