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:

 

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.

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.