and drive to create a future without ALS. a future and drive to create our determination and name capture to End ALS! Our new look Walk for ALS is now the The Walk UNITES US ALL THAT A COMMON GOAL www.walktoendals.ca/bc Spring 2019 Newsletter of the Amyotrophic Lateral Sclerosis Society of British Columbia IN THIS ISSUE A COMMON GOAL 1 Walk to End ALS A COMMON GOAL THAT UNITES US ALLTHAT UNITES US ALL 2 2018 ALS Research The Walk for ALS is now the The Walk for ALS is now the Review Walk to End ALS! Our new look Walk to End ALS! Our new look and name capture our determinationand name capture our determination 3 Living with ALS and drive to create a future withoutand ALS. drive to create a future without ALS. Support Groups www.walktoendals.ca/bc www.walktoendals.ca/bc 4 Taxes and Charities: Maximizing the benefits of your A COMMON GOAL money when you THAT UNITES US ALL are no longer here The Walk for ALS is now the Walk to End ALS! Our new look 7 A Day of Caring for and name capture our determination Caregivers and drive to create a future without ALS. www.walktoendals.ca/bc 8 Camp Alohi Lani 2019 10 2019 Fundraising Events 14 Managed Expendable Fund: ALS Centre of Excellence Fund ALS SOCIETY OF BRITISH COLUMBIA 16 Events Around 2019 DATES & LOCATIONS the Province Saturday, June 15 Surrey Wednesday, May 15 17 2019 Team ALS BC Langley Christian School Saturday, June 22 & Yukon Volunteer Kamloops Conference Saturday, June 1 Williams Lake Richmond-Vancouver - Steveston Sunday, June 23 18 Victoria Chapter Sunday, June 2 Prince George Events Fort St. John Tri Cities - Port Coquitlam Sunday, September 15 West Kootenay - Nelson Victoria 19 North Central Island Chapter Events Saturday, June 8 Vernon Fraser Valley - Abbotsford Sunday, June 9 walktoendals.ca/british-columbia Kelowna Mid Island - Parksville AMYOTROPHIC LATERAL SCLEROSIS SOCIETY OF BRITISH COLUMBIA SPRING 2019 1 2018 ALS Research Review Through a portion of net proceeds raised through the WALK for ALS, the ALS Society of British Columbia is proud to contribute research spotlight to the ALS Canada Research Program, which aims to accelerate Does a viral infection play a role in ALS initiation research impact by providing funding support for the best ALS and progression? projects focused on someday translating scientific discoveries into Yasir Mohamud is a PhD candidate in the lab of Dr. treatments for ALS. Honglin Luo at the University of British Columbia. In 2018, he was awarded a $75,000 trainee award through In 2018, the ALS Canada Research Program funded 14 new the ALS Canada Research Program in partnership research projects, totalling a more than $1.7 million investment with Brain Canada. With this award, Mohamud will investigate a potential relationship between enterovirus in Canadian ALS research. The funding will support the infection and ALS. next generation of ALS researchers bring forward new and Enteroviruses are a group of viruses that can cause a innovative discoveries and help established researchers further variety of infectious illnesses, usually with mild symptoms advance our understanding of the disease – all to help create a such as fever, respiratory distress, flu-like muscle aches future without ALS. and rashes. Some researchers have long suspected that enteroviruses may be linked to ALS due to their ability to • A $1 million investment was made toward eight research harm motor neuron function, but the available evidence projects that aim to enable the exploration of new of a causal link has so far been inconclusive. therapeutic targets, extend existing research to support Dr. Luo at the University of British Columbia recently discovered that infecting motor neurons with further discoveries and help researchers gain a greater enteroviruses can cause biological changes that are understanding about why ALS progresses differently in remarkably similar to those seen in ALS. The similarities each individual. include TDP-43 protein abnormalities and a reduced ability for motor neurons to clear and recycle cellular • An additional $720,000 in funding was also provided in waste in a process called autophagy. Based on these partnership with Brain Canada for six new trainee awards observations, Mohamud believes that enterovirus infection may play an important role in how some cases to support the next generation of ALS researchers currently of ALS begin and progress. pursuing PhDs or postdoctoral research positions, with the As the majority of ALS cases are sporadic, meaning aim of sustaining high-quality Canadian ALS research. This that they occur without any apparent family history of investment represents the last of the matched funds from disease, Mohamud hopes that this project will provide Brain Canada following the Ice Bucket Challenge, as well a deeper understanding of the underlying triggers of as a new partnership with La Foundation Vincent Bourque, sporadic ALS and reveal a promising new target for treatment development. which helped to make one of the trainee awards possible. “It’s an exciting time for ALS research as scientists continue to make advances toward our understanding of the disease. This is correlating to more clinical trials than ever before, including some experimental therapeutics that are poised to reveal definitive answers on their potential to slow ALS in the coming year. Technology is also at a threshold where we are beginning to tackle some of the big questions that have never before been possible, such as why this disease is so different from person to person. These questions are big and complex, but ones the research community is hoping to explore. In the meantime, the donations from generous Canadians across the country continue to fuel the ALS Canada Dr. David Taylor Research Program’s support of world-class researchers that are impacting the global effort toward a future without ALS.” —Dr. David Taylor, VP Research, ALS Canada 2 NEWSLINK OF THE ALS SOCIETY OF BC Living with ALS Support Groups The groups provide an open, friendly and safe environment for ALS patients, family members, friends and caregivers to discuss issues related to living with ALS. ALS BC trained volunteers facilitate the groups, and they are a major point of contact between the Society and the ALS community. We recognize support groups aren’t for everyone, but we also know that not too many people know exactly how fun support groups can be. We laugh and learn so much that it is hard to imagine why some people choose to “go it alone.” Just know we’re here when you need us. Abbotsford MEETING LOCATION CONTACT Last Saturday of each month Ross Road Community Church Dave Walman (except July, August, and December) 3160 Ross Road, Abbottsford P 604.837.5383 2–4pm Kamloops MEETING LOCATION CONTACT Third Friday of each month 107 – 490 Lorne Street, Kamloops Pat Tomlinson 1–3pm P 250.319.4516 | E [email protected] Kelowna MEETING LOCATION CONTACT Last Friday of each month Trinity Baptist Church Louise Adderley (except July, August, and December) 1905 Springfield Road, Kelowna E [email protected] 1–3pm North Central Island MEETING LOCATION CONTACT First Wednesday of each month Nanaimo Ecumenical Centre Shirley Theriault 1 :30–3:30pm 6234 Spartan Road, Nanaimo E [email protected] NEW! Prince George starting April 10, 2019 MEETING LOCATION CONTACT Second Wednesday of each month St. Giles Presbyterian Church Deborah Miller 1 :30–3:30pm 1500 Edmonton Street, Prince George E [email protected] | T 250.964.3365 Surrey MEETING LOCATION CONTACT Last Tuesday of each month 17567 57th Avenue, Surrey Alexandra Guerrero (except July, August, and December) E [email protected] 2–4pm Vancouver & Area MEETING LOCATION CONTACT Last Wednesday of each month The Fair Haven United Church Homes Thilini Amaratunga (except July, August, and December) 2720 E 48th Avenue, Vancouver E [email protected] 10:30am–12pm Victoria MEETING LOCATION CONTACT Third Sunday of each month (except June Health Unit Ellen Mahoney [the 2nd Sunday]; July and August) 1947 Cook Street, Victoria P 250.920.9502 2–4pm Use side door off parking lot. Would you like to participate or start a support group in your area? We provide training! To find out more details about dates and locations of upcoming events, please contact: P 604.278.2257 ext. 226 E [email protected] Thank you to the Province of British Columbia for sponsoring the Support Group Program of the ALS Society of BC through the BC Gaming Community Grant. SPRING 2019 3 Taxes and Charities: Maximizing the benefits of your money when you are no longer here Many people will give to charitable donated directly to charities to take advantage organizations during their lifetime and benefit of the “zero percent inclusion rate” which from the various tax advantages of doing so. reduces the usual taxable amount of a capital The most common example is giving to your gain, which is 50%, to 0%. favorite charity and receiving a tax receipt that However, to take advantage of the tax benefits can then be used when you file your tax return. of charitable giving, the estate plan must be What is often forgotten however, is that these properly structured. Some pitfalls include: tax advantages are also available to benefit Jeremy Wong your estate (and ultimately your beneficiaries 1. Naming a non-profit organization that is Estate Planning Lawyer by leaving them with a “bigger piece of the not recognized by the Canada Revenue Westcoast Wills & Estates pie”) if gifts are made to charities within your Agency as a registered charity. Care estate plan and they are properly structured. must be taken to check the charities registry to ensure that gifts are being As discussed above, the most common made to a registered charity and that form of tax advantage that can arise from they are properly identified in the Will charitable giving is through donation tax (i.e.