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.
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
The ALS Society of Canada (ALS Canada) and the Kevin Daly Bursary Fund are pleased to announce the recipients of the 2023 ALS Canada Kevin Daly Bursary, granted to post-secondary students who share a personal connection to amyotrophic lateral sclerosis (ALS).
The ALS Canada Kevin Daly Bursary is a national program for eligible students who have a close connection to ALS: those whose parent(s) or legal guardian is living with or has died of ALS – a fatal neurodegenerative disease that results in progressive paralysis and, eventually, the loss of the ability to move, speak, and breathe. Amongst many challenges, families impacted by ALS often encounter financial hardship due to the significant costs associated with ALS.
The Bursary program is supported by the Kevin Daly Bursary Fund, established in 2023, which honours ALS community member Kevin Daly, diagnosed with ALS in 2020, and his commitment to ALS families. Funding for this initiative is raised through the Bursary Fund campaign with donations managed by ALS Canada and the TELUS Team Care program. The campaign awards a minimum of one $2,500 bursary annually to help offset the expense of pursuing post-secondary education.
“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. “Through the generosity of the Kevin Daly Bursary Fund, we are so grateful to be able to provide support to young community members touched by ALS from across Canada as they continue toward their educational goals, forging a path of resilience.”
2023 Recipients
Catherine Brassard is a 22-year-old medical student at the Université de Sherbrooke. After her father’s ALS diagnosis in early 2023, Catherine developed an interest in neurology and embarked on a journey to cherish each moment, both at home and in the classroom.
“As a future doctor, I hope that my patients can also find, in my toolbox, what is best for them in coping with grief,” says Catherine. “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. I strive to maintain good mental health so that I can give my loved ones the best of myself.”
Daniella D’Amici, a 23-year-old biomedical engineering student at the University of British Columbia, defies adversity. Navigating her father’s ALS diagnosis in 2022, Daniella continues her studies while shouldering the role of caregiver alongside her mom and sister.
“I struggle most with the mental impacts of the disease; it is confusing and frustrating to wrap your head around a disease that has no known causes or cure. Although dealing with ALS has been painful in every way imaginable, it has brought my family closer than ever,” says Daniella.
“My father’s ALS diagnosis has pushed my independence and resourcefulness,” says Daniella. “In the face of life’s uncertainties, this bursary provides a crucial anchor of security.”
At just 22 years old, Sarah Jacob, a neuroscience student at the University of Calgary, stands as a beacon of determination. With her mother’s ALS diagnosis in 2018, Sarah has balanced her studies with caring for her mother. As a Master’s student, Sarah is studying ALS focusing on identifying potential biomarkers.
“In the course of my post-secondary education, I’ve heavily depended on student loans,” says Sarah. “This bursary offers a financial cushion that will alleviate the burden of relying on these loans.”
Applications were reviewed by a panel appointed by ALS Canada, including the Kevin Daly Family and other members of the ALS community.
“We are excited to have helped create the ability to assist young adults in navigating the impact of ALS,” says the Daly family. “We are privileged to play a small part in supporting their post-secondary journey and look forward to helping more students in the years to come.”
ALS Canada and the Daly Family congratulate these remarkable individuals for their resilience, academic dedication, and unwavering spirit in the face of ALS-related challenges. Their journeys epitomize the power of the human spirit to triumph over adversity, inspiring others along the way.
– 30 –
For more information, please contact:
ALS Society of Canada
media@als.ca
437-703-5440
Celebrating ALS community member Kevin Daly, a new bursary of $2,500 supports the financial needs of post-secondary students
Toronto, ON – In partnership with the friends and colleagues of ALS community member Kevin Daly, the ALS Society of Canada (ALS Canada) is pleased to announce that applications are now open for the first year of the ALS Canada Kevin Daly Bursary. The $2,500 bursary will be awarded annually to a post-secondary student whose life has been touched by ALS. The Kevin Daly Bursary Fund was created in 2023 to honour Kevin, a devoted father and husband diagnosed with ALS in 2020. Inspired by Kevin’s courage and dedication to other ALS families, the Fund will help support a student to achieve their goal of higher education.
“The ALS Canada Kevin Daly Bursary is a testament to Kevin’s courage and dedication to supporting the ALS community,” says Tammy Moore, CEO, ALS Society of Canada. “ALS is a devastating disease that impacts the individual and their loved ones, including children. This can make planning for the future challenging. Through this program, we hope to lighten some of the weight carried by families who have been touched by ALS. We are so grateful for Kevin’s unwavering commitment to uplifting families within the ALS community.”
The Bursary is open to Canadian students who have been accepted into a post-secondary school within Canada for the 2023-2024 term. Eligible students must also have a close connection to ALS: those whose parent(s) or legal guardian is living with ALS or has a parent(s) or legal guardian who has passed away from ALS.
Applications for the 2023-2024 academic year open on May 16, 2023, and close at midnight Eastern time on June 20, 2023. The application form can be found on the ALS Canada website. Applications will be reviewed by a panel appointed by ALS Canada, including members of the ALS community and a decision made before the 2023 academic year begins in September.
“Since being diagnosed with ALS and seeing how this disease affects an entire family, having two daughters of my own, it was important to me that the Bursary support young people in reaching their goals and pursuing their dreams,” says Kevin. “Our mission is to help make higher education accessible so everyone can have an opportunity to thrive.”
The Kevin Daly Bursary Fund has been created as part of a lasting legacy, celebrating the life and character of Kevin. Funding for this initiative will be raised during a year-long Bursary Fund campaign with donations managed by ALS Canada and the TELUS Team Care program. The campaign will run each year and award a minimum of one $2,500 bursary annually. All donors will receive a receipt from ALS Canada for their contribution. For more information on the Fund, visit kevindalybursary.com.
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. More than 3,000 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
ALS Awareness Month is drawing to a close, but our efforts to create a future without ALS continue year-round. Driven by the ALS community, we look to create connection and impact, sharing the progress towards our mission along the way. This includes sharing the ALS Society of Canada’s 2021 Annual Report to the community.
Throughout the year, ALS Canada and our Community Services team in Ontario continued to navigate a virtual world. We designed a hybrid support and services model so people living with ALS and their caregivers were supported no matter the pandemic restrictions in place.
Thanks to the generosity of our donors, we were able to deliver critical support and services, including the ALS Canada Equipment Program, to more than 1,200 people and families affected by ALS across Ontario. With the help of Community Leads like Joanna Oachis, whom you’ll read about in our Annual Report, families affected by ALS have received information and referrals to supports in their communities so they can navigate the course of ALS after a diagnosis.
Meanwhile, ALS research holds more promise than ever. Researchers are working tirelessly to better understand the disease, to find targets, and identify treatments that can alter the course of the disease. ALS Canada is the only source of dedicated ALS research funding across Canada to advance this work, and we invested nearly $2 million through the ALS Canada Research Program last year.
On the advocacy front, we continued to engage with elected officials to change the status quo – especially around expedited access to emerging ALS therapies. We also launched our inaugural Canadian ALS Learning Institute, an online, small-group learning experience to empower the ALS community to learn more about the research landscape and how new therapies become available to Canadians.
ALS Canada receives no core government funding to support our mission work. Our work is fuelled by donors and an enthusiastic response to our fundraising events, which not only raise crucial funds but also build community and allow people affected by ALS to unite and drive momentum together.
We are truly grateful for the many ways donors, fundraisers and volunteers came together around our shared cause. We encourage you to read more about the faces behind our mission and impact in the 2021 Annual Report to the community.
2021 Annual Report to the community
In late 2018, Facebook began offering the option for Canadians to create fundraisers for nonprofit organizations or for personal causes. Since then many of you have reached out to us with questions about how these giving options can be used to support ALS Canada. We know Facebook can be a quick and easy way to raise money and engage your friends and family, and are grateful to all who have chosen to support us in this way.
There are some important things to be aware of when creating or donating to Facebook fundraisers, so here’s a primer on the options available and how they work – along with using our ALS fundraising website.
1. Facebook: Raising money for a nonprofit organization
Visit facebook.com/fundraisers. You can create a fundraiser for ALS Canada by searching for “ALS Society of Canada” from the list of registered charities. Donations are processed at no cost to the donor or to the individual who set up the fundraiser. For your donation, you will receive two separate emails: a transaction receipt for the payment and your official donation receipt. These are sent by Facebook on behalf of their fundraising partner, the PayPal Giving Fund, which delivers the funds to ALS Canada.
Some things to be aware of when creating or donating to Facebook fundraisers to support ALS Canada:
If you or your donors have any questions about setup, donations, donation receipts or refunds, you must contact theFacebook Fundraiser Support Centre.
When you donate through Facebook, we do not receive your contact details and therefore are not able to communicate with you.
As per Canada Revenue Agency regulations, we are not allowed to issue tax receipts for donations that are made to a third-party charity—in this case, the PayPal Giving Fund.
2. Facebook: Raising money for a personal cause
Personal causes generally refer to fundraisers in response to individual needs – for example a family that requires financial support after losing their home to a fire, or an education fund for a child whose parents have suddenly passed away.
If you create or give to a personal fundraiser on Facebook, a portion of the donation is used to cover processing fees. Funds are deposited to the bank account specified by the person who set up the fundraiser. The person who set up the fundraiser is responsible for making sure the donations are sent to ALS Canada.
Some things to be aware of when creating or donating to personal causes on Facebook:
Tax receipts are not issued when a person donates to a personal fundraiser because the donation doesn’t go directly to a charity but instead goes to the bank account specified by the person who set up the fundraiser.
Only a charity with a registered charitable number from the Canada Revenue Agency can issue tax receipts.
Example of a successful ALS fundraiser
Adam Foley used My ALS Fundraiser to meet (and surpass) his $12,000 fundraising goal for his 900km bike ride in memory of his brother, Matthew.
3. ALS Canada’s “My ALS Fundraiser” platform
Visit My ALS Fundraiser at www.als.ca/myalsfundraiser to create your own fundraising event or find an existing event to give to. When you fundraise through our platform, ALS Canada will receive the contact information for each donor and automatically issue them a tax receipt by email when they donate online. This helps us stay in touch and provide support for your tax receipting requirements. We also have lots of resources available here, including an event organizer toolkit, templates for things like posters or social media, and best of all, your very own ALS Canada event coach to support you every step of the way.
Interested in fundraising with us? Contact our team at teamals@als.ca or head over to the My ALS Fundraiser website to get started.
Thank you to all our donors for their generosity and continued support—in any way you choose to give.
Thank you for your generosity
2018 was a momentous year for the ALS community. Discoveries were made that advance our understanding of the disease, clinical trials showed encouraging results, and the first therapy in over 20 years was approved for use in Canada for people living with ALS.
Yet in the same year, ALS continued to take countless moments and lives from families. We know how much ALS takes, and we know how desperately the community needs hope for a brighter future.
That’s why, over the holidays, we asked you to help stop ALS from continuing to take. Between Giving Tuesday and December 31, 2018, you gave generously in support of people and families living with ALS.
I donated in memory of my Dad who left our world nine and a half years ago because ALS wasn’t curable. I am hoping that one day it is so other people don’t miss out on time together.
These donor dollars are being used to help offset the financial burden for people and families living with ALS in Ontario by giving them access to equipment such as wheelchairs, walkers, ramps and stair lifts, all of which are made available through ALS Canada’s equipment loan program.
I gave for my mom, Anusuya Casinathan, who nurtured, cared and taught us to be independent. In her last days, her independence was severely curtailed. ALS Canada was on her side helping as much they could.
In addition, donations received during the 2018 holiday season will be used to invest in promising research that will pave the way for a future without ALS.
My donation was for my beautiful auntie Marlene who passed from ALS at the age of 59. ALS Canada was a massive support. To the researchers: PLEASE DON’T STOP! WE SUPPORT YOU! With love from SSM, Julia
On December 13, 2018, Dr. David Taylor, VP of Research at ALS Canada, made a Facebook Live announcement about research funding made possible thanks to donor dollars. If you missed it, you can watch the archived video below.
Thank you so much to everyone who gave a gift and shared their reasons for giving over the holiday season. Your stories reinforce the pressing need for research funding and one on one support for Ontarians living with ALS. Together, we can take a stand against all that ALS takes.
I gave in solidarity to all the people who live with this horrible disease. Giving to the cause fuels the hope that one day, ALS won’t be a terminal disease anymore.
I was diagnosed with ALS last May. I am 79, so I don’t have enough years left to hope for a cure for ALS. I do hope by contributing to this fund, that some hope may result. Emile
With so much progress being made, we can’t afford to lose momentum. Your gifts are already doing amazing things in creating hope, improving quality of life for those living with ALS, and contributing toward a future without ALS. There’s one more thing you can do that has tangible results: join ALS Canada’s Circle of Hope Monthly Giving Club.
2017 Annual Report to the community
In 2014, the Ice Bucket Challenge gave hope to people and families living with ALS – hope that one day there would be a cure for this terminal disease. With the Ice Bucket Challenge came an immense responsibility to invest donor dollars with care and consideration, and as a result, ALS Canada’s investments have helped to make great strides in the areas of research and awareness.
Your commitment to funding supports research grants that enable Canada’s ALS research community to advance scientific discovery in support of new treatments. By helping our community navigate available healthcare options and provide access to support services we aim to empower people to make informed decisions about ALS. Through advocacy we keep the pressure on government to better meet the unique challenges and needs of our ALS community. Every day across Ontario, your commitment to ALS Canada helps families living with the reality of an ALS diagnosis to be better supported in the community.
Even in the face of a devastating disease, our ALS community is a resilient and hopeful one, and together, we have the power to make change happen. The 2017 Annual Report is a celebration of you -our supporters and allies – which illustrates the impact of your generosity.
Here are just a few highlights made possible by you over the last year:
2, 987 pieces of equipment that improve quality of life were delivered free of charge
The first 200 Canadian DNA profiles (of a target of 1,000) were contributed to Project MinE with funding from ALS Canada and matching funds from Brain Canada
ALS Canada attended all three ALS Caucus meetings that took place in 2017, with topics ranging from the need for equitable and affordable access to new therapies, to the importance of dedicated, ongoing research investment to bring clinical trials and emerging therapies to Canada
2017 Annual Report to the community
The ALS Society of Canada is part of a passionate and compassionate community united in our deep desire to improve the lives of people living with ALS and to make ALS a treatable, not terminal disease. We know that it takes ALL OF US—donors, volunteers, people living with ALS, caregivers, researchers, and advocates—to make a difference.
As a charitable organization that receives no government funding, ALS Canada relies on the generosity of our donors to provide support and services that help to ease the burden of ALS, and also help fund Canadian research with the greatest promise to slow down or even stop the disease. ALS Canada’s newly published annual report summarizes our efforts in 2016 to make a difference for people living with ALS.
Here are a few highlights from 2016 made possible by the determination, generosity, and resiliency of ALS Canada’s supporters:
1,100+ people received services from ALS Canada in 2016
Thanks to donor and partner generosity, ALS Canada raised $6.9 million in 2016
ALS Canada awarded $3.5 million in research grants in 2016, $2.7 million of which was matched by the Brain Canada Foundation for a total of $6.2 million
On October 4, the inaugural ALS Caucus meeting took place on Parliament Hill
Nearly 200 individuals, families, and organizations donated new or used equipment to ALS Canada with an estimated value of more than $250,000
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2, 987 pieces of equipment that improve quality of life were delivered free of charge
The first 200 Canadian DNA profiles (of a target of 1,000) were contributed to Project MinE with funding from ALS Canada and matching funds from Brain Canada