CONNECT ALS Society of Canada Société de la SLA du Canada Spring 2015 CANADA NEW DRUG TRIAL FOR ALS MANAGING THE JOURNEY THROUGH ALS ALS Canada Equipment Program EVERLASTING LOVE COMING TOGETHER TO CHANGE THE FUTURE OF ALS GET INVOLVED A new volunteer program at ALS Canada MY HUSBAND HAS ALS MESSAGE FROM TAMMY MOORE CEO challenging and therefore more costly to solve. Due to a relatively small population that is living with the disease, it has made it more difficult to secure funding. • As early as December funds from the Ice Bucket Challenge and matching funds from Brain Canada were used for additional Discovery Grants and the Arthur J Hudson Translational Research Grant. • We will continue to make investments that will: Between August 8 and December 31 2014, over $17 million was raised within Canada through the Ice Bucket Challenge. Leveraged with a match of an additional $10 million from Brain Canada and the Federal Government the total is over $27 million for ALS research and support services for the ALS community in Canada. Globally the number is estimated at $220 million. While it is a significant amount of money that was generated, it is still a ‘drop in the bucket’ to what is needed. The Economic Burden of ALS study1 that was published in 2014 demonstrated the cost to a working age, Canadian family to be $150,000 $250,000 in direct and indirect costs over the short window of the diagnosed person’s life. • ALS Canada fulfills a crucial role in Ontario in helping approximately 1100 people living with ALS and their families to navigate the realities of ALS through in-home visits, education, support and bereavement groups and the provision of equipment whether through an established loan pool or direct funding. The support that we have been providing for many years helps offset some of the costs associated with the financial and emotional burden. • We will be making investments with the funds from the Ice Bucket Challenge to ensure our core programs are sustainable for the future and identifying other projects that will help ease the hardships associated with ALS. ALS is a complex disease, so understanding the cause and potential treatment is more - accelerate research discoveries; - foster collaboration and infrastructure within the Canadian research community. We continue to advocate at a federal level for changes to the Compassionate Care Benefit. This would provide caregivers with income support for 35 weeks instead of the 6 weeks that is offered within the current program. Given the profile of the meetings we have had with government officials and bureaucrats in Ottawa we are hopeful that we may see the change in the Federal Budget for 2015. Depending on the number of people who access the program, it is estimated this could provide $5M - $10M in direct income support annually to Canadian families living with ALS. As a solely donor funded organization, we are now gearing up for our significant events which happen between May and October. We hope you will come out and support one of the 32 WALKs for ALS which will be held in Ontario. In 2014 we had a goal of $1.775M for Ontario and raised $2.1M, we have now set a target of $2.25M for Ontario and $4.3M for Canada for the WALKs. Not only are the WALKs a significant fundraiser, they are also a tremendous way for the ALS community to come together – both for people currently living with ALS but to also remember and honour people who have passed away. As I attend the WALKs around our province, I am constantly touched by the incredible people I meet and their very powerful, personal stories. The ALS Canada Golf Classic on Thursday June 4, will be held at the prestigious private King’s Riding Golf Club. Bring a foursome and join us at this renewed tournament. The ALS Canada Bombardier Plane Pull will be moving to the early fall – stay tuned for more information on this novel team building activity. For the cycle enthusiasts, come join us for either a 20 or 70km ride at the Jim Hunter ALS Cycle for a Cure on September 27. At ALS Canada, we are honoured to serve the brave people who live with the realities of ALS. We are incredibly appreciative of all of the volunteers who give so tirelessly to support the needs of the community and raise the much needed funds. We have tremendous gratitude for the many donors who continue to support the cause. Together, we will make ALS a treatable, not terminal disease. Economic burden of amyotrophic lateral sclerosis: a Canadian study of out-of-pocket expenses. Gladman M. et al. (2014) 1. MANAGING THE JOURNEY THROUGH ALS ALS Canada Equipment Program IN THE KNOW By Eleanor Leggat, Vice President of Support Services The equipment program has continued to be the focus of much activity over the summer and fall months of 2014. A committee comprised of board members, clients, healthcare professionals and staff was chartered to oversee a detailed review of the existing equipment program. The purpose of the review Brigitte Labby North East [email protected] Charlene Spector South West, Grey-Bruce & Niagara [email protected] own Regional Managers regarding their experiences with the current equipment program and suggestions regarding key elements of an equipment program. In reviewing the information, very similar issues/concerns were found regardless of the location of the program. The nature of equipment programs was found to be highly influenced by government programming/ funding and the size of the population served. All equipment programs reviewed presented: • consistency in efforts in streamlining of systems and processes to find efficiencies Laurie Laxer Mississauga, Halton & Niagara [email protected] Joanna Oachis Central West, Waterloo Wellington [email protected] • need to collaborate with community based health professionals The meetings with families, clients, caregivers and healthcare providers were held in person, teleconference and webinars. In the course of these meetings it was noted that: • the participants were highly committed to the equipment program • the range of opinions as to equipment preferences and what is considered “core equipment” varied significantly • the Occupational Therapists were being proactive in terms of identifying required equipment earlier. • Participants provided a range of suggestions for practical improvements to the equipment program. MEET ALS CANADA’S REGIONAL MANAGERS Sarah McGuire Simcoe –York-Muskoka [email protected] Kim Barry Central East & Thunder Bay [email protected] is to ensure the equipment program continues to operate in the best way possible so that ALS Canada is able to meet the growing needs of clients across Ontario. The committee created guiding principles to ensure a fair and unbiased approach is adhered to in the review process. Information was gathered on other charities with equipment programs from across Canada, the United States and overseas. Input was also obtained through meetings with clients, families, families who have lost loved ones, ALS clinic staff, health professionals and our Sarah Reedman Toronto [email protected] Lianne Johnston South East & Champlain [email protected] • cost savings through centralization/reduction in number of vendors, simplification and standardization of processes and systems Some changes included improved inventory tracking and rationalization and thinning of inventory. During the information gathering process consistent elements identified across all equipment programs were the: • use of a financially based means test; • importance of relationship building In your community, our committed and compassionate team of Regional Managers work with clients and families managing their journey through ALS. As we move into 2015, to ensure ALS Canada adheres to the commitment of supporting ALS clients to live at home/place of residence (outside of a government funded facility) as comfortably as possible and also ensuring that ALS Canada is financially sustainable over time, based on the analysis of all the data collected, the information gathered will be integrated into a renewed equipment program. In Spring 2015, the equipment program will be brought to clients, family members and healthcare professionals for a final consultation prior to implementation of any changes. IN THE KNOW | Page 3 IN THE KNOW NATIONAL VOLUNTEER WEEK GET INVOLVED A new volunteer program at ALS Canada By Vanessa Blount, Director Policy and Program Development Volunteers are central to what we do everyday. Each year we are fortunate to welcome approximately 300 volunteers into ALS Canada. This year, we are launching a volunteer program called the ALS Canada Ambassadors. This new program is for people who want to get more deeply involved in the ALS community and ALS Canada. Ambassadors will take on a leading role as a guest speaker on behalf of ALS Canada, conducting speaking engagements to a diverse set of audiences like government officials, community stakeholders and the public. The aim is to educate and inform about ALS, our organization and the ALS community. As this is the inaugural year for the program, we will be testing new and exciting environments with the team. We are looking for experienced volunteers who have an interest in public engagement, communications and are active members within the ALS community and/or have a strong connection to ALS Canada. This could be you. Watch for the ALS Canada Ambassadors page and application posted on als.ca in September 2015. Page 4 | IN THE KNOW Did you know Canada has an estimated 13.3 million volunteers? Along side other charities, ALS Canada will celebrate National Volunteer Week from April 12-18, 2015. Join ALS Canada on Facebook and Twitter during National Volunteer Week and give a shout out to our volunteers or someone special you know who volunteers. Volunteer Canada will be celebrating volunteers with the National Volunteer Week symbol, a rock. This symbol represents the ripple effect of how one person can make a difference. Available at the National Volunteer Gift Store, you can purchase rocks that feature the engraved message, Volunteers Rock. For more information visit, http://volunteer.ca/nvw2015. ALS MAKES HISTORY ON THE HILL November 19 was a landmark moment for the ALS community and ALS Canada. On this day, we announced our partnership with Brain Canada and the Government of Canada’s matching gift of $10 million to be directed towards ALS research. A ground breaking achievement thanks to the ALS Ice Bucket Challenge and our team’s ability to continue to honour the integrity in stewarding your donor dollars. MY HUSBAND HAS ALS By Zaga Poznan My name is Zaga Poznan, and I am Milan’s wife of almost 44 years. We met in the fall of 1970 on campus at the University of Belgrade in Serbia (at that time Yugoslavia). We fell in love - probably at first sight - and have been that way all these years. In 1972, we moved to Canada. What I love about my husband the most are his eyes because they are truly the windows into his heart and soul. He was and still is a gentle giant, personified. The man does not have a mean bone in his body. He loves everyone and gives people a lot more leeway than most of us would. I have not yet met anyone who does not like my husband. October 1, 2008, was the day the doctors pronounced Milan’s diagnosis. Milan had ALS. That was the day I mourned my husband’s death. Time stopped; our world changed completely and the constant heartache moved in. Today, Milan is in a long term healthcare facility. Everyday I am losing him one day at a time and there is nothing anyone can do to stop it or reverse it. ALS shattered all our plans for a peaceful, relaxed and joyful retirement. It also took away the pleasure of helping our only daughter with her infant son. It put unforeseen financial burden on our family and despite taking away some of our friends, this disease has also introduced me to some amazing new ones. For me, the hardest part was getting used to living alone (which I did not do since my 20’s). It brought health issues related to a tremendous amount of stress but also gave me the strength and resolve to go forward and do all that I can to help Milan live a dignified existence. Milan with his two best friends Frank Aylward and Ray McKinnon The one thing that I have learned from Milan and his seven years of living with ALS is that you do not know how much you love life until you are on the brink of death. Also, no one should have the right to decide someone else’s faith, as long as that person has the smallest chance to communicate their own wishes. Milan, in spite of the debilitating effects of ALS on his body and mind still believes and hopes that a cure will be found. He wakes up every morning with a smile and hope on his face and in his heart. He and I both believe in the power of the human mind and hope that there is somewhere in this world a brilliant scientist working fervently to decode the mystery of ALS! I have witnessed that a positive attitude and a load of love and care can be an amazing weapon in the fight against this awful disease. I have found that compassionate healthcare works miracles; a kind word, a gentle hand and a sunny day without a wind brings so much joy to my husband. For all of those other wives/husbands out there going through this awful journey, I just want to say to be prepared that it may be a long and difficult battle – a battle that you will not want to take alone. Accept help from your family and friends. And know that you are not alone. By Frank Aylward My name is Frank Aylward. Milan is my friend and former colleague. We met about thirteen years ago and struck it off well. Milan is a fine gentle person with a very big heart. He always put others’ needs first. He has a great big smile that is uplifting and makes you feel better just to be around him. He has taught me that life is very precious and not to take life for granted. I feel very lucky to have a good friend like Milan. IN THE KNOW | Page 5 IN THE NEWS NEW DRUG TRIAL FOR ALS In partnership with Brain Canada and the Government of Canada, we are proud to announce the first research grant from the funds raised from the ALS Ice Bucket Challenge. The Arthur J. Hudson Translational Team Grant will be used to test clinical response to the drug pimozide, as well as to examine a potential new biomarker test for understanding how this drug therapy works in ALS patients and determine which patients would best respond to this therapy. Pimozide is a Health Canada approved drug for patients with schizophrenia and Tourette’s syndrome, which has shown to be effective in stabilizing neuromuscular function, thereby strengthening the connection between our motor neurons and muscles. The team’s hypothesis is that treatment with pimozide may slow down the paralysis in ALS patients. The trial is being led by Dr. Lawrence Korngut at the University of Calgary and Dr. Lorne Zinman at Sunnybrook Health Sciences Centre. It will test the safety and efficacy of this potential treatment on 100 ALS patients across eight ALS clinics in Canada. If proven effective, pimozide will be tested in a larger trial to examine if it can be used as a marketed therapeutic to slow down ALS progression in the wider population. We will provide more information about the trial (sites, timelines) as it gets closer to recruiting. Page 6 | IN THE NEWS TWEETABLE RESEARCH #makealstreatablenotterminal By Dr. David Taylor, Director of Research @ALSCanResearch @ALSCanada Over the past year, thanks to your generous donations, ALS Canada has been able to fund multiple research projects with top Canadian researchers across the country. On a daily basis, we collaborate with a network of researchers to ensure your dollars make an impact in the field of ALS. Here is a summary of the projects you helped fund in 2014. For more information and details of each project visit als.ca. ALS CANADA BRIDGE GRANTS Our Bridge Grants offer short-term funding of 1-2 years to keep the momentum of research projects when they fail to receive full government funding. Dr. Neil Cashman University of British Columbia Studying if non-mutant SOD1 could cause ALS by a change in its structure to a toxic form & if that starts a cascade of toxic SOD1 formation Dr. Jasna Kriz - Université Laval Examining crucial factor (IL-10) in bad activation of immune cells (microglia) before and during ALS & hoping it is a new target for therapy Dr. Steven Plotkin - University of British Columbia DISCOVERY GRANTS Five recipients received the Bernice Ramsay Discovery Grants. Each grant provides funding for one year ($100,000 per recipient) to build a foundation of data for novel, ‘outside-the-box’ ideas in ALS research. ALS CANADA BRAIN CANADA DISCOVERY GRANTS Dr. Heather Durham - Montreal Neurological Institute Examining the pathways that affect the upper branches of motor neurons called dendrites and what causes them to shrink in ALS Dr. Charles Krieger -Simon Fraser University Novel treatment strategy using bone marrow cells to deliver substances that target & eliminate toxic factors in diseased brain & spinal cord Dr. Alex Parker - Université de Montréal Using worms to examine how a form of the immune system (called innate immunity), previously not studied in ALS, plays a role in the disease Dr. Janice Robertson -University of Toronto Identifying substances interacting with C9ORF72 (most prominent genetic cause of ALS) to better understand pathways disrupted in the disease Dr. Melanie Woodin -University of Toronto Using computers to understand how SOD1 structure changes to toxic form & find new ways to design therapies that bind & eliminate toxic SOD1 Studying upper motor neurons for early causes of excessive firing possibly involved in causing ALS & looking for ways to rescue the effect Dr. Michael Strong - University of Western Ontario BERNICE RAMSAY CLINICAL RESEARCH FELLOWSHIP Dr. Amanda Fiander - University of Calgary Learning more about RGNEF, a newly identified substance causing a genetic form of ALS & seeing if it could be a new target for therapy Dr. Marvin Chum - Western University/London Health Sciences Centre London neurologist to train in specialized care of ALS & research into clinical trials, as well as improved palliative/end-of-life ALS CANADA DOCTORAL AWARD This award provides $105,000 spread over three years, for salary of a promising PhD student who will work on ALS. Alexandra Lissouba Tatarinoff - Université de Montréal Seeking pathways affected in two fish ALS models from different mutations - common mechanisms, but different origins = new treatment targets TIM E. NOËL POSTDOCTORAL FELLOWSHIP The Tim E. Noël Postdoctoral Fellowship provides $165,000 spread over three years for salary of a promising postdoc, nurturing bright young minds into focusing on ALS as a potential career Dr. Claire Leblond - Montreal Neurological Institute, McGill University Looking for spontaneous/somatic (noninherited) mutations occurring in known ALScausing genes of people who have sporadic disease ARTHUR J. HUDSON TRANSLATIONAL TEAM GRANT (2015) Lawrence Korngut & Lorne Zinman - University of Calgary & Sunnybrook Health Sciences Centre New clinical trial of pimozide - 8 ALS centres across Canada - 100 participants & study of biomarker to determine who is likely to benefit To learn more about these projects, visit ALS.CA. NFLD/PEI neurologist trains in Calgary to specialize in ALS care & clinical trial research - hope of leading a future new Maritime clinic IN THE NEWS | Page 7 IN THE COMMUNITY L PLACANNADEA PUL FOR ALS COMING TOGETHER TO CHANGE THE FUTURE OF ALS ALS CANADA GOLF CLASSIC L PLACANNADEA PUL FOR ALS 2013 September 13, 2015 June 4, 2015 September 27, 2015 One Plane. One Rope. One Great Cause. Gather your foursome and hit the fairway at this year’s ALS Canada Golf Classic. A brand new venue, this year we will be at the private King’s Riding Golf Club in King City. Site of the 2000 Canadian PGA Championship, King’s Riding Golf Club is a strategically sophisticated course measuring 6,502 yards with a par of 71 that will challenge elite players. In partnership with the Hunter Family, this cycling fundraiser is a 20 km or 70 km ride raising money for ALS research. This year we are proud to welcome partners, the Tanz Centre for Research in Neurodegenerative Diseases (University of Toronto) and Sunnybrook Foundation. A unique event that provides a once-in-alifetime opportunity – pulling a 37,000lb Bombardier Q400 NextGen aircraft. Are you up for the challenge? Sign up a team of ten and see if you can go the distance. als.ca/planepull als.ca/golfclassic Page 8 | IN THE COMMUNITY alscycleforacure.ca MAY 9 • Peterborough 18 • Halton Region 30 • Kingston • Toronto • Peel Region JUNE 6 • Alliston • Orangeville • North Bay 7 • York Region • Cornwall • Niagara Region • Georgetown/Acton 13 • Almonte • Barrie • Kitchener-Waterloo • Ottawa 20 • Durham Region • Hamilton • Sudbury 27 • Sault Ste. Marie • Wingham • Scarborough 12 • Brampton 19 • Belleville-Quinte • Parry Sound 26 • London 27 • Mount Elgin SEPTEMBER • Smiths Falls • Thunder Bay • Timmins • Smiths Falls Virtual WALK for ALS is available 365 days, 24/7 The WALK for ALS is the largest fundraiser for the ALS Societies across Canada. Donations given through the WALK provide essential equipment and support for people living with ALS and fund critical research to make ALS a treatable, not terminal disease. With 32 WALKS in Ontario and over 90 across Canada, there’s a WALK for ALS near you. Join us and help raise $4.3 million nationally; $2.25 million in Ontario. WALKforALS.ca RAISING AWARENESS FOR ALS One Bracelet at a Time By Jacqui Devine In 2012, we started noticing something was different about dad. After a year of tests, which included acid reflux, throat cancer and CT scans, my dad was diagnosed with ALS on August 8, 2013. It’s really hard to explain what a family goes through when this happens. But for my dad, spirit-wise, he is great. He can still walk around but can not go long distances. He uses his BiPaP everyday and has a feeding tube, suction and cough assist machine. My dad has always had a sense of humour and still jokes around with my mom. A few weeks after my dad was diagnosed the first thing that crossed my mind was “Do I move back home to help my mom and dad?” I live in Pickering but my parents live in Glencoe, three hours away. I asked my parents “What do you want me to do?” My dad said, don’t stop your life for me. I didn’t, but I needed to do something to help. I went online and found ALS Canada. I looked up the volunteer section and right away got involved volunteering at various fundraising events. Since then I have participated in the Bombardier Plane Pull, the ALS Canada Golf Classic, the London and Durham Region WALK for ALS and the Hike for ALS. The events are a lot of fun, raising awareness, and the fundraising is definitely needed. But putting all of those things aside, I like these events the most because I have met so many people that have helped me. They have been a great support system. Still I wanted to do something more. On the anniversary of Lou Gehrig, I had an idea to make bracelets to help raise awareness and money for the ALS community. I have never made bracelets before, but I was determined to succeed. Today, I make bracelets made out of different beads like Shamballa beads, and beads made out of glass, plastic and metal. All of my bracelets are nickel-free. Now I sell my bracelets through word-of-mouth and through my Facebook page https://m.facebook.com/ raisingawareness1braceletatatime What I have learned through our family’s journey with ALS is you have to look at things day by day and lean on those that love you. Don’t give up. There’s so much to life and you never know what tomorrow will bring. IN THE COMMUNITY | Page 9 IN THE COMMUNITY EVERLASTING LOVE By Debbie Fortune I met Mark in June 2008 when we were both employed by Sobeys. He was such a nice man - kind, considerate, thoughtful, funny, and so handsome. He was a real gentleman. We became good friends and two years later in 2010 we started dating. He was the man I had looked for my whole life. When we started dating I remember thinking that I was so lucky because I was dating my best friend. We enjoyed picnics at the beach, romantic dinners, laughter and we held hands like two teenagers in love. In April-May of 2011, we noticed that something was wrong. Mark would trip walking in my back door, his speech was different and he told me “my legs are heavy”. In July of 2011, Dr. Shoesmith at London University Hospital confirmed that Mark had ALS. We had been Page 10 | IN THE COMMUNITY dating for 9-months and were planning on buying a house and spending the rest of our lives together. Once the shock wore off I thought that I can sit here and wait for ALS to rear its ugly head or we can live our lives. In September of 2010 on our one year anniversary, Mark put an engagement ring on my finger and asked me to share his life. We moved in together with my 12-year old daughter and between the three of us, made memories to last a lifetime. ALS took Mark’s life in October 2012, two weeks before his 50th birthday. I was devastated beyond words. This amazing man who showed us nothing but strength and courage; who laughed and smiled almost everyday of the 16-months that he lived with ALS, was gone. I couldn’t wrap my head around loosing him. I walked in circles. I looked for his car and when I would come home I expected him to be there. After a period of time I thought to myself I can sit here and feel sorry for myself or I can try and make a difference and maybe someday they can find a cure for this devastating disease. I spoke to a co-worker at Sobeys and together we planned a BBQ in memory of Mark with 100% proceeds to be donated to the ALS Society. I spoke to a couple of other Sobeys stores in our area and they also had a BBQ for ALS that same day in memory of Mark. Together we raised almost $4000. My goal is to make our BBQs a yearly event and for me, Mark’s memory will live on. He deserves to be remembered. And for all the people living with ALS, they deserve to hope for a cure. ALS Society of Canada Société de la SLA du Canada PLEASE GIVE IN SUPPORT HOW YOU CAN HELP FIGHT ALS ALS Canada needs your support. Today, there is no treatment for ALS. As a donor, you are helping people living with ALS by funding support services, an equipment program and critical research to make ALS a treatable, not terminal disease. There are many ways to give and every dollar counts. If you would like to donate to ALS Canada, go to als.ca/donate or mail us in your completed form. Name Address City Province Email Address Postal Code Phone I would like to support ALS Canada: With my gift of: $ With my MONTHLY gift of : $ Cheque enclosed Charge my: Please charge my account on the Complete this form and mail back to: ALS Society of Canada 3000 Steeles Avenue East, Suite 200 Markham, Ontario L3R 4T9 AMEX MasterCard 1st VISA 15th of each month Attached is my void cheque Card Holder’s Name Card Number Expiry (MM/YYYY) Signature Fax (if paying by credit card): 905.248.2019 An official tax receipt is issued automatically for all single donations of $20 and over. Charitable Registration Number: 10670 8977 RR0002 IN SUPPORT | Page 11 CHANGE THE REALITY OF ALS HELP MAKE ALS A TREATABLE, NOT TERMINAL DISEASE A PLANNED GIFT WILL MAKE A DIFFERENCE IN THE LIVES OF PEOPLE LIVING WITH ALS AND HELP TO FUND ADVANCES IN RESEARCH THAT WILL MAKE A CHANGE FOR THE FUTURE. IS THERE A PLACE FOR THE ALS SOCIETY OF CANADA IN YOUR WILL? TO DISCUSS OPPORTUNITIES FOR GIVING AND YOUR WISHES FOR YOUR GIFT, PLEASE CONTACT US AT 1.800.267.4257 OR [email protected] CANADA ALS Society of Canada, 3000 Steeles Avenue East, Suite 200, Markham, Ontario, L3R 4T9 1.800.267.4ALS (4257) | www.als.ca Legal Name: Amyotrophic Lateral Sclerosis Society of Canada. Charitable Registration Number: 10670-8977-RR0002
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