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ALS Ambassadors

Jacqui Devine – Durham Region
Jacqui came to the ALS Community in 2013 when her father was diagnosed with ALS at the age of 59. She started volunteering at events like the Bombardier ALS Canada Plane Pull, the Hike for ALS and attended numerous WALK for ALS fundraisers across the province. Jacqui is also an artisan. She hand-makes beaded bracelets which she sells, donating a portion of her proceeds to ALS Canada. 

A strong supporter of the ALS community, Jacquie wanted to get involved to continue to help spread the word  about this terminal disease. 

If you would like to hear Jacqui tell her personal story, please send an email to ambassadors@als.ca

Tara Favretto – Central Ontario                                                                                                                 Tara has been involved as a WALK coordinator for the Barrie WALK for ALS since 2011; the year her mother was diagnosed with ALS at the age of 65. A busy mom, Tara juggles three teenagers, and a full time job, and is a dedicated volunteer for ALS Canada.  For Tara, being an ALS Ambassador is “one of the few things that I can do to change or influence a situation that made me feel so helpless”. Tara’s mom lost her battle with ALS in in 2015.  One of the last things she said to Tara was to promise to never stop trying to find a way to stop others from ever having to endure what she did. Today, Tara continues to fulfill her mother’s last wish. 

If you would like to hear more about ALS Canada and Tara’s story, please send an email to ambassadors@als.ca.

Dan Riverso – Toronto Region                                                                                                                   Dan has a personal connection to the cause.  Dan’s father succumbed to the disease 20 years ago when he was a young man in his teens.  The experience remains fresh in his mind as if it happened yesterday. ALS left his mother and three brothers without a father. Dan’s mission is to bring further awareness to the disease and assist in ultimately finding a cure. As an engaged volunteer, Dan has worked with the ALS Society of Ontario and Canada in various roles and capacities over the past 15 years. He has raised money for the ALS Yoga Challenge, helped with the Hike for ALS and Family Day and also did a co-op term with the Society during university. 

If you would like to hear Dan tell his personal story, please send an email to ambassadors@als.ca

Vincent Quinn – Central Ontario                                                                                                           Vincent is both a volunteer and a client. In 2011, Vincent’s wife noticed his left foot slapping the ground when he walked. This led to a long journey navigating Ontario’s medical and social systems -  quite a different experience to Vincent’s 30 years working as a prosthetics/orthotics technician in the healthcare system. . Vincent diagnosis came in  2014. He is 51, married and a father to two daughters.

To hear more about Vincent’s journey with ALS, please send an email to ambassadors@als.ca.

Kinga Repic – Central West and Peel Region
Kinga was only 21 when she found out her mother was diagnosed with ALS in 2006. Upon receiving the news, she  made a decision that would change her life forever,  she moved back home and along with her father, became her mom’s full time caregiver. Four years later, Kinga’s mom passed away from ALS. 

Kinga’s connection to ALS inspired her to get involved in fundraising and awareness for the cause  any way she could. She organized and created  unique events like the ALS Cup for a Cure Soccer tournament, which she ran for 5 years, bike rides from Boston to New York,  and in theNapa Valley in California, to plunging into the Atlantic Ocean and even jumping out of a plane!  Her story has been featured in  ALS Canada direct mail programs, helping to raise more than $40,000 for ALS research.  She continues to share her story with local media and has been appeared on broadcasts through Rogers television and Inside Guelph. 

Kinga was the first recipient of ALS Canada’s Leader of Tomorrow Award and is connected to people living with or affected by ALS all over the world.  

To hear more about Kinga and ALS please send an email to ambassadors@als.ca.

Emma Fattori – Central Ontario and Toronto Regions
Emma has a unique connection to ALS – she has multiple family members who have experienced ALS. Although 90% of cases of ALS are sporadic, 10% of cases are what are called familial cases where genetics predispose family members to be at a higher risk for the disease. With having ALS so much a part of her family, Emma became more interested in educating others about the disease, the research and this resilient community. Emma first came to us as a volunteer with the Bombardier Plane pull for ALS Canada and is now a knowledgeable speaker for ALS Canada. 

To hear more about ALS and Emma’s family story, or how ALS affects youth, please send an email to ambassadors@als.ca

Eddy Lefrançois – Northern Ontario
Eddy was diagnosed with ALS on April 14, 1992: it’s a date I will never forget, I even remember it was a Tuesday at about 11:40. Because of that day, I got to meet all of you wonderful people.  

Eddy is a rare case of someone who has managed to live surpass the average life expectancy of 2 to 5 years. He wants to share the story of ALS, what it is like to live with the disease and be a a voice for others who died before their voices could be heard. In Eddy’s own words: I may not control the fact that I have ALS, but I can control my actions by making people aware that ALS is a terrible disease to live with…anybody can develop this disease at any time...

Eddy has experience sharing his story with the ALS community and being an ‘exception to the rule’ advocates for others. Eddy is committed to helping make ALS a treatable, not terminal disease by creating awareness as an active ALS supporter and client. He has travelled around the world and continues to travel , making it known everywhere he goes who he is and  why he is in a wheelchair with limited mobility. Eddy is an active participant in media and social media and creates awareness through his personal webpage dedicated to his life with ALS: www.lets-roll.ca. Now Eddy is an Ambassador for ALS Canada.  

If you would like to hear more about Eddy’s journey and ALS please send an email to ambassadors@als.ca

Anne-Ellice Pascoe – Hamilton and Peel Regions
Anne-Ellice has been volunteering with ALS Canada for over six years, with a special focus on the WALK for ALS and is a passionate advocate for the cause; raising awareness and  funds for research and client services.  Over her many years of being involved with the community, Anne-Ellice has made and lost many friends. As Anne-Ellice says in her many conversations with caregivers and people impacted by the disease there are always so many questions. If there are so many questions within the community itself, there is a lot more we can do for awareness, and this is where Anne-Ellice would like to help. 

If you would like to have Anne-Ellice participate as an Ambassador for you, please email ambassadors@als.ca

Ron Myles – Northern Ontario
Ron comes to ALS Canada after being diagnosed with ALS in 2015. Ron has worked as a manager in hotels and restaurants for 40 years and still continued to work at Home Depot after retiring at 60 for eight years. Ron refuses to let ALS slow him down and wants to continue to work in the spirit of supporting those who live with or are affected by ALS by sharing his experience.

If you would like to hear more of Ron’s story please email ambassadors@als.ca.

Caphan Lieu – Toronto Region                                                                                                           Caphan is committed to advancing the ALS cause as his mother was diagnosed with ALS in 2014. Caphan comes to ALS Canada with a high level of “Ambassador” experience having worked on a similar program for Parkinson Society Canada. As one of his mother’s primary caregivers, Caphan has experienced firsthand the significant impact of adapting to life with ALS. Through his work on the ALS Canada Ambassador team, Caphan hopes to raise the profile of ALS, advocate on behalf of the community and assist other families impacted by the disease. 

To connect with Caphan please email ambassadors@als.ca

Jay Johnston – Durham Region                                                                                                               Jay’s relationship began with ALS Canada in 2013 when his father was diagnosed with ALS. Shortly after the diagnosis, Jay entered a team in the Bombardier Plane Pull for ALS Canada and got his first taste of fundraising. The response was overwhelming with support for his dad, and the whole family was there to cheer on the team and offer support for the cause. Jay also organizes a Golf tournament for ALS called Golf Fore ALS. Jay was involved with ALS Canada from the client support side and watched how the need for support increased as the disease got worse.  Jay is a strong advocate for support groups. He met many families and made friends in the ALS community throughout his father’s journey. Although Jay’s dad passed away, he wants to continue to raise funds and awareness for the friends he’s made and future families that will be touched by the disease. 

If you would like to have Jay participate as an Ambassador for you or your event, please email ambassadors@als.ca

Mark Britt – Central Ontario, Toronto Region
Mark has extensive experience in both the professional and volunteer world as the Director of Internal Audit at the University of Toronto and an active participant in non-for-profit causes. ALS however is closest to Mark as his wife was diagnosed with ALS in the summer of 2012 and passed away from the disease in 2015. Mark is a father of two, staunch advocate, public speaker and fundraiser for ALS Canada and can speak first hand to the impact of the disease and the necessity for both client service and research to help change the future for ALS.  

For more information on Mark and his story please email ambassadors@als.ca

Charles Lam – Central Ontario
Charles comes to ALS Canada with a different perspective. Charles is am ambitious student fascinated by world issues and sciences and is currently pursuing his BBA at York University and has been volunteering over the last couple of years in fundraising events.  Charles has watched ALS through the eyes of his friend whose father is currently  living with ALS. Charles would like to encourage youth to volunteer with ALS Canada as it is such an important cause – trying to make this a treatable, not terminal disease. 

To have Charles come and speak about volunteering opportunities or how ALS affects youth, please email ambassadors@als.ca

 

Carol Skinner – Ottawa Region
Carol Skinner is 43 years old and lives in Kanata with her husband Travis. Her first symptoms began to appear in February of 2013, when she had difficulty skating on the Rideau Canal. At first, Carol, who had always been the one to “push Travis around on the Canal,” thought she needed to get fit again after a long winter so she began to exercise. She tried walking and running to get fit but began to trip and fall. After a series of events where Carol continued to lose her balance, she sought the advice of a doctor, who referred her to a neurologist. It was then that she and Travis were given the devastating news. On September 19, 2013, at the age of 41, Carol was diagnosed with ALS. 

Carol is truly a loved woman. With her husband by her side, she is surrounded by friends who help them in any way they can. Her blog (www.livelovelaughwithcarol.com) provides her with a venue to keep friends and family up to date with her life and the ongoing progression of the disease. 

Still a vibrant, outgoing woman, Carol, in partnership with ALS Canada has advocated on Parliament Hill for the ALS community and spoken many times to media about her story to raise awareness for the cause. 
Her motto is, “You have to live for the now and appreciate what you have – make it count.”

To have Carol speak about her experience, please email ambassadors@als.ca