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2017 ANNUAL REPORT to the COMMUNITY B ALS Society of Canada 2017 Annual Report to the Community C ALS Can Be Such an Isolating Disease

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2017 ANNUAL REPORT to the COMMUNITY B ALS Society of Canada 2017 Annual Report to the Community C ALS Can Be Such an Isolating Disease 2017 ANNUAL REPORT TO THE COMMUNITY B ALS Society of Canada 2017 Annual Report to the Community C ALS can be such an isolating disease. It exacts a terrible toll on individuals and their families. Together, we are working to lessen that burden and instill hope. By connecting people to services and support in their community. By collaborating to find research answers. By initiating meaningful dialogue to guide policy. By partnering to raise funds. This report is ALS Canada’s way of saying thank you for all you make possible, and letting you know about the difference you’re making. 2 ALS Society of Canada 3 If you have a personal connection to ALS, MESSAGE FROM ALS CANADA you’ll know that our community is a CHAIR AND CEO resilient and hopeful one, filled with incredible individuals all doing their part to create a future without ALS. You make all the difference This report is to celebrate you, our supporters. Over the course of the year, we visited ALS clinics and In it, you’ll meet four extraordinary people research laboratories across the country to see some of the important work being funded through the ALS Canada – Shelley, Denis, Norm and Beth – each Research Program and to meet with some of the volunteers champions of the ALS Canada cause whose who are participating in clinical trials you are helping stories underscore the passion and commitment to make possible. An additional $3 million was awarded driving our community forward. You will in 2017 for 12 new research projects – and because the research we fund is vetted by an international panel of also find highlights from 2017 that illustrate experts, you can be confident it is the best ALS research the impact you are having and the care and in the country with the greatest potential to slow down consideration we have given to investing your or even stop the disease (page 10, Denis’s story). donor dollars wisely and efficiently. And because ALS knows no boundaries, international collaborations are important to ensure Canada is represented in initiatives with the potential to make a difference for people living with ALS no If you have a personal connection to ALS, you’ll know matter where they live. We were proud to contribute our community is a resilient and hopeful one, filled with the first 200 Canadian DNA profiles to Project MinE, incredible people doing their part to create a future without an international collaboration that seeks to identify ALS. ALS Canada has the privilege of helping to connect the the genetic ‘signature’ that leads someone to develop many people and organizations who share our cause. We ALS, and for which we continue to advocate for federal know we can accomplish so much more working together – funding (page 14, Norm’s story). Our partnership connections that are possible only because of your support. with Brain Canada that started during the Ice Bucket Challenge continued with additional funding provided In Ontario, where we provide community-based support, in support of Project MinE, enabling our contribution we made strides to better respond to the needs of people to go that much further. living with ALS. Through thoughtful changes to our geographic coverage informed by feedback from those While we are focused on the needs of people living who receive our services, people living with ALS are now with ALS today and the research that will help to create able to have more frequent touchpoints with their local a future without the disease, we are also mindful of how ALS Canada representative, should they desire. We have also our organization needs to evolve in anticipation of been able to put donor dollars to better use by lessening the potential new treatments that are widely believed to time our field staff spend on the road(page 6, Shelley’s story). be on the horizon. We would like nothing more than to put ourselves out of business – but until that day comes, we must consider our role in helping people living with ALS to have the best standard of care; in equitably 4 ALS Society of Canada THE FACTS ABOUT AMYOTROPHIC LATERAL SCLEROSIS (ALS) accessing new treatments; and in responding to information needs. And ALS is a fatal disease with no cure. of course, to carry out this work we must have the financial resources ALS causes the brain to gradually to successfully navigate a complex, changing, and economically- stop communicating with the muscles challenging environment (page 18, Beth’s story). in the body — taking away the ability to move, speak, eat, swallow, and To that end, a major undertaking in 2017 was the development of eventually breathe. ALS Canada’s new strategic plan to guide our work over the next five years and beyond. This process was grounded in the perspectives of 80% of people living with ALS die many representatives from our community: people living with ALS, within 2-5 years of diagnosis. caregivers, donors, researchers, clinicians, our Board, provincial partners, the Canadian and international research community, and An estimated 3,000 Canadians other health charities. Their input was essential in helping to shape are living with ALS. our shared vision for a future without ALS. Collectively, and with the Every year 1,000 Canadians are continued support of generous donors like you, we know that a future diagnosed with ALS and a similar without ALS can become a reality. number die. 5 to 10% of ALS cases are hereditary. The average cost of ALS to a family is $150,000 - $250,0001. Also known as Lou Gehrig’s disease and motor neuron disease (MND). Ron Foerster, Chair Tammy Moore, CEO 1 Source: “Economic burden of amyotrophic lateral sclerosis: A Canadian study of out- of-pocket expenses,” by Matthew Gladman, Celina Dharamshi and Lorne Zinman, published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 2014. 2017 Annual Report to the Community 5 SHELLEY & MELISSA’S STORIES SHELLEY Everyone living with ALS is burdened with the terrible knowledge that their disease is terminal. Facing each day with optimism is not easy. It wasn’t easy for Shelley Sterling, who passed away in May of 2018. But even when ALS had taken her ability to walk and compromised her breathing, Shelley found a way to maintain her sense of humour and her positive outlook. After a night this past winter when After she was diagnosed, Shelley Ultimately, the grace and dignity with she spent long hours sitting up in bed made an effort to meet other people which Shelley faced her struggle with coughing and “huffing and puffing,” with the disease. When she was first ALS was a testament to her extraordinary Shelley still found a way to bring in touch with ALS Canada, her Regional character and an inspiration to everyone humour to the situation by asking her Manager Laurie connected her with who became part of her community. ALS Canada Regional Manager, Melissa, others living with ALS. The resulting “how the Big Bad Wolf did it” when he sense of community was uniquely Shelley had a gift for needed to fill his lungs with air. comforting to Shelley, who received making friends and practical tips like purchasing specially- Shelley was grateful for many things shaped bowls and spoons with curved connecting with people, in her life, especially the loving care handles to make eating food easier; so it wasn’t too surprising she received from her husband, Jim, using a portable power wheelchair to that the first year she her children Hollie and Tom, and her help get around outside of the house, participated in the WALK big black Newfoundlander, King Arthur, and listening to webinars hosted by for ALS, 120 of her friends who didn’t leave her side the night ALS Canada for helpful information. showed up and helped she was in distress as a result of that serious coughing fit. She also felt lucky Shelley spoke highly of the support she raise $17,000. for the support she received from received from Laurie – and also Melissa, ALS Canada and inspired to give back who became her new Regional Manager by fundraising for the WALK for ALS. in 2017. Shelley said the transition was “seamless,” and she talked about Shelley had a gift for making friends how much she valued Melissa’s and connecting with people, so it positive attitude, her knowledge, wasn’t too surprising that the first year and her willingness to cover any subject. she participated in the WALK for ALS, Shelley expressed gratitude for the 120 of her friends showed up and way Melissa listened to her concerns helped raise $17,000. and for her quick turnaround whenever Shelley had a question that needed further investigation. 6 ALS Society of Canada While medical advice is beyond the scope of ALS Canada’s MELISSA service offering, Melissa is able to help by making referrals Even though she supported Shelley for less than and advocating on behalf of families to receive adequate outside support. She is also there to talk through some of the difficult a year, knowing that she makes a difference in emotions, often at times when families are feeling particularly the lives of so many families living with ALS – isolated and alone in their struggle. and sharing moments of laughter despite the Melissa also plays a vital role helping people access equipment challenges – keeps Melissa inspired to do the free of charge. She remembers Shelley saying that it would best she can for all the people she supports. have been hard for her family to manage without this support including a wheelchair, hospital bed, and a power chair on Melissa (pictured below with Jim, Tom and Hollie Sterling) loan from ALS Canada.
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