Coast to Coast

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A L S S O C I E T Y O F C A N A D A • S O C I É T É C A N A D I E N N E D E L A S L A Coast to Coast

| Summer 2005 Advocacy Day in Ottawa Advocacy Day in Ottawa 1 Tilson Introduces Bill 1 Canada and more than 20 volunteers from the Ottawa What Would You Do, While You Still Could? 2 regional office. Conducting Symposium - ALS Strategies for Quality 2 the training session was pro- of Life And Quality Care fessional trainer Lori We i r, Birthday Wishes in BC 3 unit director from ALS New Brunswick and ALS Canada A Substantial Gift to Fight ALS 3 board member. Assisting her Hike The Trail to Help us Prevail 4 was Mike Gardner, a profes- sional trainer, ALS Canada Tier 2 Research Chair 4 and ALS BC board member. Elizabeth's Concert of Hope 5 Also presenting at the session were ALS Canada advo- Vancouver Coastal Health ALS Centre 5 cacy members: Lanny Back row - left to right - advocacy committee members Lori Weir and In the News 5 Lanny McInnes. Front row - left to right - Conservative MP Steven McInnes from ALS Manitoba, Fletcher, Charleswood - St. James - Assinboia and Marcel Bertrand, Teresa Riverso from ALS ALS Canada Board Meeting in Ottawa 6 ALS Manitoba president and ALS Canada board member. Ontario, and David Cameron he ALS Society of 1st. Attending were ALS and Bobbi Greenberg from ALS Canada Elects New President 6 Canada advocacy com- Canada board members, ALS ALS Canada. Tmittee held a training Canada staff, ALS executive In Memoriam 6 session in Ottawa on May directors from across Continued Pg. 3 ALS Symposium - Unmasking ALS 7

P A R L I A M E N T house today to introduce leaves the senses unim- June is ALS Awareness Month 7 H I L L - David a bill that would honor paired and the intellect Tilson, MP for those who are dedicated is often unaffected. Tw o ALS Canada Award Winners 8 D u f f e r i n - C a l e d o n and work so hard to to three Canadians a day Brummitt-Feasby ALS House 10 introduced his learn more about this die of ALS. first Pr i v a t e disease in order to dis- " We are thrilled that the Genetic Testing for ALS 10 M e m b e r’s Bill that cover both the cause and Member for Dufferin- if enacted would cure, " Tilson stated. Reserve these Dates 11 Caledon, Mr. David designate the This Bill will ensure the Tilson, has introduced month of June as ALS Society Staff Announcements 11 month of June shall be this Private Member’s A m y o t r o p h i c known as "ALS Month" Bill to increase aware- Lateral Sclerosis New Research Grant 12 throughout Canada each ness of this devastating (also known as Cognitive Changes may be Associated y e a r. disease that affects 12 ALS or Lou with ALS thousands of Canadians Gehrig's disease) ALS is a progressive and beyond the more than Former Students Celebrate Life of Te a c h e r 13 Month. ultimately fatal neuromuscular disease that 2500 people who live WALK for ALS 13 "As this issue is causes nerve cells to with it," stated David S. close to my heart degenerate. The volun- Cameron, national exec- ichannel Special Presentation 14 I was pleased to tary muscles weaken and utive director of the ALS stand up in the become immobile. ALS Society of Canada. Planned Giving 15

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What Would You Do, While You Still Could?

On February 23, 2005, a recep- "Running" features a man on the showing. The purpose of Canadian celebrities - ALS tion was hosted at the Albany what appears to be an endless the campaign is to raise spokesperson and opera singer Club in Toronto by the ALS jog. As he stops to catch his awareness about ALS and the Jean Stilwell and actor Wendy Society of Canada to honor breath, the line 'Most people ALS Society's efforts to support Crewson were also present. BBDO Canada, one of the with ALS lose the use of their research towards a cure for The ALS Society of Canada is country's largest and most suc- legs in the first two years of this devastating disease. pleased to announce that cessful advertising agencies. the disease,' appears on Speakers at the reception BBDO Canada received a screen. The man then turns BBDO Canada has been work- included ALS Society of bronze award at the 2005 around and continues his run ing on a pro-bono basis with Canada national executive Marketing Awards for the as the campaign tagline the ALS Society of Canada director David S. Cameron, “What would you do, while since March of 2004 to you still could?” campaign. develop an awareness- The award was in the Public generating creative Service TV and Radio campaign. The public Campaign category. The service announcement marketing awards, with (PSA) campaign that roots that go back 83 years, had been created was are Canada's leading screened at the recep- national awards recognizing tion. excellence in advertising creative. The campaign includes two 30-second PSAs, The PSAs have aired nation- " Running" and ally on CBC, The Weather "Hugging." In "Hugging" Network, CTV, The Food viewers watch as a man Channel, Much Music, The hugs all that he comes Score and ichannel. In in contact with: a addition, the "Hugging" PSA police officer handing was aired in April at him a ticket, his disin- Famous Player Cinemas terested horse and the across the country in waitress pouring his English and French. coffee. As he hugs a Dr. Janice Robertson and Jack Neary two of the presenters The campaign has received tree, the line 'Most coverage in S t r a t e g y, people with ALS lose at the reception smile for the camera. Marketing Magazine, a n d the use of their arms in leading ALS researcher Dr. PR Canada News. the first two years of the dis- appears. Janice Robertson of the ease,' appears on the screen. Both PSAs are available in University of Toronto's Centre BBDO has also designed two As he hugs his sleeping wife, French and English and can be for Research in print ads which will be appear- the campaign tagline asks, viewed online at www.als.ca. Neurodegenerative Diseases, ing in newspapers, subway sta- What would you do, while you BBDO Canada president and tions and buses across the still could? ALS kills the body The PSAs were extremely well- chief creative officer Jack country in June for ALS first. Please donate, received at the reception, N e a r y, and Elizabeth Awareness Month. www.als.ca appears. with a heartfelt outburst of Grandbois who has ALS. applause at the conclusion of Symposium - ALS Strategies for Quality of Life and Quality Care

David S. Cameron, national rent research, and to convey Talks were given by leading panel presentation addressed executive director of the ALS practical and technical informa- Canadian ALS Doctors Michael topics related to ALS resources Society of Canada, says, "The tion for people with ALS and Strong (ALS - current clinical in the community including purpose of ALS Strategies for their families." concepts), Colleen O'Connell speech therapy, palliative care, Quality of Life and Quality Care, (ALS as a treatable disease: the and a client perspective. a symposium on ALS is to provide The symposium was held on June rehabilitative approach to man- Speakers for the panel presenta- a unique learning experience for 14th at the Ottawa Congress agement), Tim Doherty (Health- tion included Clark Lavender health-care professionals in the Centre in conjunction with the care professionals: the electro- (living with ALS for nine years), presence of those who are cur- annual Canadian Congress of diagnostic approach to motor Susan Carroll-Thomas (speech- rently experiencing the disease, Neurological Sciences Meeting, neuron diseases) and Heather language pathologist), and Dr. to offer up-to-date treatment and was hosted by the ALS Durham (Hope for the future: Louise Coulombe (palliative information that is based on cur- Societies of Canada and Ontario. advances in ALS research). A c a r e ) .

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Coast to Coast | Summer 2005

Advocacy Day in Ottawa Continued from Pg. 1 Birthday Wishes in British Columbia Volunteers and staff of the ALS Society participate in annual fundraising events, including WALK for ALS, Hike for ALS and the Last February, B.C. resident McKinnley Concert of Hope, to create public awareness McGregor turned eight. Instead of birth- about the disease and raise funds to find a day gifts, he asked his guests to make cure. donations to the ALS Society of British Columbia. I urge all Canadians to donate to their local chapters of ALS so that the dream of finding McKinnley's father Dean has ALS and has a cure can become a reality.” been able to continue communicating with family and friends with the use of a Mr. John Duncan (Vancouver Island North, Dynawrite on loan from the ALS Society CPC): “Madam Speaker, the ALS Society of of British Columbia. McKinnley under- Canada is the national voluntary health stood the value of the Dynawrite to his organization dedicated solely to the fight father and wanted to thank and help the against amyotrophic lateral sclerosis, also ALS Society of British Columbia for the known as Lou Gehrig's disease. The ALS support they had provided his father. Society works to fund ALS research and to improve the quality of life for affected McKinnley's family including his mother and father, stepmother, stepfather, Marcel Bertrand Canadians. President of ALS Society of Manitoba grandparents and friends were at the and ALS Canada board member Imagine not being able to walk, talk, write, birthday party, which was held at the smile, eat, or sometimes breathe on one's climbing gym in Richmond B.C. On Monday, May 2nd, ALS volunteers, own, and yet the mind usually remains McKinnley set a goal of raising $300 and including those living with ALS, caregivers, intact and senses remain unaffected. Three he surpassed this by raising more than former caregivers, board members, ALS staff thousand Canadians live with the disease. $800. And, Global TV covered the event and executive directors met with more than Two to three Canadians a day die from ALS. helping to raise awareness about ALS. 25 members of parliament, senators and There is no known treatment and no known senior bureaucrats to discuss our key mes- cure, yet. sages. The meetings were held in teams of The ALS Society fundraises through events, three. including WALK for ALS, Hike for ALS and the During the day we had the opportunity to Concert of Hope. attend question period and two MPs - Bryon I urge Canadians to participate with their Wilfert and John Duncan read member state- ALS Society to turn the dream of finding a ments in the House of Commons about ALS. cure into a reality.” Hon. Bryon Wilfert (Richmond Hill, Lib.): To view their speeches in Hansard go to: “Madam Speaker, I rise today to acknowledge the tremendous work of the ALS Society of h t t p : / / w w w. p a r l . g c . c a / 3 8 / 1 p a r l b u s / c h a m- Canada. The ALS Society of Canada, founded b u s / h o u s e / d e b a t e s / 0 8 9 _ 2 0 0 5 - 0 5 - 02/HANO89-e.htm It's amazing what an eight-year-old in 1977, is the only national voluntary health with a big heart can do. McKinnley organization dedicated solely to the fight The day culminated in a special reception on McGregor and his father Dean at against ALS, amyotrophic lateral sclerosis, the Hill. More than 75 MPs, senators and McKinnley's birthday party. also known as Lou Gehrig's disease. senior bureaucrats attended the standing- room only event. ALS Manitoba president The ALS Society is the leading not-for-profit A Substantial Gift to Fight ALS health organization working nationwide to and ALS Canada board member Marcel fund ALS research and work to improve the Bertrand spoke from the heart about what it The ALS Society of Québec received an quality of life for Canadians affected by this is like living with this devestating disease early Christmas gift last year from The disease. and the importance of research. André Delambre Foundation - a $100,000 donation. Imagine not being able to walk, write, smile, "The event was a huge success and we plan talk, eat and sometimes breathe on one's on continuing our efforts to raise the profile Two years ago, André Delambre, execu- own and yet the mind usually remains intact of ALS with politicians across the country. tive vice-president of finance and with senses unaffected. This is what having We truly appreciate the Ottawa volunteers - administration for an entertainment ALS is like for 3,000 Canadians who live with those living with ALS and their caregivers management company was diagnosed this disease. Two to three Canadians a day and former caregivers who spent two days with ALS. He created a foundation to die of ALS. There is no treatment for ALS and with us, raising the profile of this disease support people afflicted with this devas- no known cure, yet. Ninety per cent of and meeting with politicians to explain the tating disease. Canadians diagnosed with ALS die within two ravages of ALS," says David S. Cameron, ALS Currently, there are approximately 600 to five years. Canada national executive director. people living with ALS in Québec.

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Coast to Coast | Summer 2005 Hike The Trail to Help us Prevail

For the 3,000 Canadians who those living with ALS and their family to join in the fight to find new people to join the suffer from the devastating families. Participants can reg- against ALS," Wiesenfeld says. ALS team. The ALS communi- effects of ALS, taking even ister on-line to join the hike "Our goals are optimistic, we ty is relatively small and by small steps requires a big and are able to take advan- hope to raise $100,000 for ALS creating a new event that effort. The ALS Society of tage of some wonderful elec- through this event. Volunteers people can relate to. It gives Canada has decided to match tronic fundraising tools. are a crucial part of making us the opportunity to intro- those efforts and is taking an event such as Hike 4 ALS duce new donors and volun- Matthew Wi e s e n f e l d , steps for those who cannot. a success. The ALS teers to the ALS Society and development co-ordi- Society would like to engage them in further pro- Hike 4 ALS is a new and inno- nator for the ALS bring on partners gramming." vative program inspired by Society of Canada to aid in sup- those living with ALS around would like to Local hikes are being held in porting, pro- the globe. It was created to see partici- several locations across moting and parallel their tenacity and pation in Canada on October 15, 2005. f u e l i n g hope towards finding a cure t h i s If you would like to partici- t h e and is being executed nation- pate in Hike 4 ALS or for more ally through the ALS Society information visit www.als.ca/ of Canada. Hike 4 ALS targets events. outdoor enthusiasts of all fit- ness levels to participate in hikes that take place in local communities across Canada. The hikes are designed to f i g h t Designate your United offer something for hikers of y e a r ' s to find a Way Contribution all skill levels and people h i k e cure." from all backgrounds are span coast- Help people living with ALS encouraged to participate in to-coast and W i e s e n f e l d by designating your United this unique and fun event. wants everyone states, "Part of Way contribution to the ALS The objectives of Hike 4 ALS to feel included. the reason we are so Society of Canada. Ask your are to support ALS research "We want people to excited about the pro- Human Resource representa- tive how. and patient-care services for recruit their friends and gram is because we want

Tier 2 Research Chair Awarded to Dr. Janice Robertson

On April 22, University of Toronto-based ALS researcher Dr. nisms that cause motor neurons, the cell type affected in Janice Robertson was awarded a Tier 2 Canada Re s e a r c h ALS to die as a means to developing effective therapeutic C h a i r. strategies. Based at the University of To r o n t o ' s Tier 2 Chairs, tenable for five Centre for years and renewable once, are N e u r o d e g e n e r a t i v e for exceptional emerging Diseases, Robertson com- researchers, acknowledged by bines studies of trans- their peers as having the poten- genic mice modelling ALS tial to lead in their field. For and human ALS pathologi- each Tier 2 Chair, the university cal tissue using both pro- receives $100,000 annually for tein-biochemical and five years. molecular-cell biological To demonstrate her commit- techniques. She is cur- ment to researching this dis- rently supported by grants ease, Robertson selected the from the Neuromuscular title, "Canada Research Chair in Research Partnership. The Molecular Mechanisms of ALS Association in Amyotrophic Lateral Sclerosis," the U.S., and the UK for the award. Her research Motor Neurone Disease effort will focus on the mecha- A s s o c i a t i o n .

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Coast to Coast | Summer 2005

Elizabeth’s Concert of Hope In the News M o n d a y, May 2nd, marked the 66th The fifth annual Elizabeth's Concert of Hope was held on Saturday, anniversary of the end of Lou Gehrig's February 12 at the Dofasco Centre for the Arts in Hamilton, Ontario. consecutive games streak. Score TV’s Proceeds from the concert are used to fight ALS. To The Point with Greg Sansone devot- ed one hour on the subject of Lou Elizabeth Grandbois is the founder of this annual concert that raises Gehrig, focusing primarily on the dis- funds for research into the disease along with the provision of client ease that would later bear his name. support services. This show took a detailed look at his The first four Concerts of Hope collectively raised more than brilliant career, a closer look at ALS $1,200,000 for ALS research and client-support services. and interviewed two people who have ALS and the doctor that treats them. The idea to hold a concert with high-profile Canadian performers first occurred to Grandbois in 1999, only two years after she was diagnosed I n t e r v iews included: with ALS. "Music will always be with us," she stated. "It is a universal William We i r language that carries the message of joy, humanity, and hope from the Former triathlete who has ALS past, through the present, and into the future." Grandbois is a remark- able woman who has dedicated herself completely to raising awareness Elizabeth Grandbois and funds to hasten the search for a cure. Former nurse who has ALS This year's event featured many Canadian celebrities including We n d y D r. John Tu r n b u l l Crewson, Johnny Reid, Tom Cochrane, Cindy Church, Ian Thomas, ALS specialist from McMaster Murray McLauchlan, and Marc Jordan, among others. More than University Medical Centre $280,000 was raised at this year's concert. Jonathan Eig Lou Gehrig biographer of Luckiest Man Vancouver Coastal Health ALS Centre The Score television network is a national specialty television service The Vancouver Coastal Menno Froese, ALS es. which provides sports news, informa- Health ALS Centre at G.F. Canada board member tion, highlights and live-event pro- Dr. Neil Cashman, one of Strong Re h a b i l i t a t i o n and president of ALS BC, gramming, available across Canada in the world's leading Centre held its official discussed the importance more than 5.5 million homes. For experts in neurodegenera- opening on March 23rd. of the new centre in help- more information check out The tive diseases will be head- The Vancouver Coastal ing to better focus avail- Score's web site at www. t h e s c o r e . c a ing the clinic. Cashman is Health ALS Centre is the able resources on meeting to be named the D r. Janice Robertson was inter- result of the con- Canada research viewed in The Toronto Star about her solidation of chair in neurode- work in ALS research. If you would V a n c o u v e r generation and like to receive a copy of the April 16th General Hospital protein misfolding article, please contact Enzo Raponi at and G.F. Strong's diseases and will [email protected] or 1-800-267-4257 ext. 205 ALS services be moving to under a private- Vancouver from The Ones left behind - a powerful public partner- Toronto in July. story about a young couple from ship whose orga- There are approx- Ottawa - Phil and Colleen Budakowski nizational struc- imately 500 and their two young children. Phil is ture will maxi- patient visits per 40 and has ALS. The story was pub- mize the poten- year to the clinic, lished in The Ottawa Citizen on April tial for signifi- and approximate- 2 7 . cant discoveries ly 400 B.C. resi- and development Also published in The Ottawa Citizen dents are current- of effective new was an article entitled A Revolution in ly living with ALS. therapies. The Menno Froese, ALS Canada board Dying about the Van Loan family. member and president of ALS BC. combination of Attending the Patricia Van Loan has familial ALS and the two services event was nation- in the article she discusses what it is brings together research, the needs of those living al executive director of like living with ALS and her daily diagnosis, treatment, and with ALS and why this ALS Canada David S. struggles. The extremely moving arti- support at one location, centre is beneficial to Cameron, donors, clients, cle was published on April 29. making the new centre those living with this dev- staff, researchers and the province's specialized astating disease in terms those living with ALS and hub for ALS care. of easier access to servic- their caregivers.

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Coast to Coast | Summer 2005

ALS Canada Board Meeting in Ottawa

The ALS Society of Canada held its annual The following people were confirmed as The following people were elected as general meeting in Ottawa on April 30th. At unit directors and members of the ALS members-at-large of the 2005-06 board the meeting one new board member was Canada board for 2005-2006: of directors of the ALS Society of Canada: elected - Jylan Khalil from Calgary. Retiring from the board are Sybil Frei and Paul Muirhead both from Ottawa. Cheryl Power - Newfoundland and Doretta Thompson - Ontario Labrador Sean McConkey, from Burlington, Ontario Cathy Martin - Alberta has been elected president of the ALS Briann Smith - Nova Scotia Richard Thompson - Ontario Society of Canada for a two-year term. Lori Weir - New Brunswick Dr. Jean-Pierre Julien - Québec Members of the executive committee are: Betty McNab - Prince Edward Island Michael Gardner - British Columbia Sean McConkey - president Michael Mayne - Ontario Lise Deschesnes - Québec Ben Wendland - vice-president Bill Tyrer - Saskatchewan Nigel Van Loan - Ontario Ben Wendland - British Columbia Doretta Thompson Marcel Bertrand - Manitoba Vacant until ALS Ontario AGM, then Nigel Richard Thompson Gloria Miller - Saskatchewan Van Loan Michael Mayne - immediate past presi- Jylan Khalil - Alberta Tim Stauft - Alberta dent& interim treasurer Dr. Monique D'Amour - Québec Menno Froese - British Columbia Deborah Lavender Deborah Lavender - Ontario David Cameron - secretary Sean McConkey - Ontario ALS Society of Canada Elects New President

serve ALS Canada well as it strives to Currently, McConkey is the director of increase awareness of the disease and human resources at Deloitte & Touche support for those who suffer from it. LLP. In this role, he is responsible for guiding the overall HR strategy for the "I will work to ensure that ALS Canada GTA region. These duties include plan- governs in a way that honors and supports ning, implementing, and managing human the ALS Society of Canada's mission state- resource strategies through a team of HR ment: to support research, provide quali- professionals. This scope includes recruit- ty care to those persons living with ALS, ment, compensation and benefits, train- and to build public awareness," says ing and development, employee rela- McConkey. tions, and ex-patriot programs. For the past five years, McConkey has McConkey holds a B.Sc. from the been very involved with the ALS Society University of Toronto, and completed a of Canada. He has sat on numerous com- post-graduate diploma in human mittees. Starting as the chair of the Effective April 30, Sean G. McConkey was resources management at Humber human resources committee in 2000, he elected to the position of president of the College of Applied Arts and Technology. quickly took on two additional posts in ALS Society of Canada. 2001 - serving as the fundraising commit- He resides in Burlington with his wife and McConkey's extensive experience in tee chair as well as vice-president of the three daughters and enjoys gardening and human resources and management will board of directors. skiing in his spare time. In Memoriam

D. Michael Fitz-James, the zine from 1997 to 2004, and c o m / m e m o r i a l . h t m l . on the provincial executive founding editor of T h e also served as the legal board for ALS. His generous London resident, M i c h a e l Lawyers We e k l y , died of ALS affairs commentator for CBC H a l l s who donated $5 mil- gift created the Michael Halls at the age of 54 on March 27. Newsworld. lion, the largest-ever gift for Centre for ALS research at The Lawyers We e k l y is known Fitz-James was held in high ALS research lost his battle the John P. Roberts Re s e a r c h as the first newspaper for the regard by his peers, who with ALS on February 26. Institute and Lawson Heath legal profession in Canada. have collaborated to share Diagnosed with ALS in 1997, Research Institute in London, He was the executive editor their favorite memories of Halls was involved with many Ontario and the Arthur J. of Canadian Lawyer maga - him at www. l a w t i m e s n e w s . ALS support groups and sat Hudson chair in ALS research.

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Coast to Coast | Summer 2005

ALS Canada Symposium - Unmasking ALS

William Weir delivered this moving speech n o w, you've been sitting far at our second biennial symposium - too long all weekend at this Unmasking ALS - October 29 -31. He spoke very demanding symposium at the closing session, which was entitled … now, if you would please "Living with ALS." Weir is a former board applaud to express our pro- member of the ALS Society of Toronto. found appreciation to you, the volunteers and merce- When some of our emotions congregate - naries alike, and to the intensely gather - we often call them fears thousands of men and especially when they develop into atti- women who have made our tudes and behaviors that limit our abilities. lives easier. Thank you. had - you have ALS. You will be told that Good morning, it's a delight to be here While you are standing, I must confess, you have a condition which will severely t o d a y, actually, it's a delight after five there is another group I would like to compress your life span. You cry. years of being in the clutches of ALS to be quickly thank. In all the readings I have However there are various institutional anywhere. However I would like to know, done, conversations I have had with so conspiracies to make you think you are liv- at a time when many societies set aside many people of the ALS community, I have ing longer. So many medical and clinical this day (Hallowe'en) to celebrate and never really heard any expression of grati- appointments which often drag on and on honor the dead and to drive away evil spir- tude or thanks for the sacrifice that this and on. Everything takes longer. You spend its what sort of person would invite people group has made. But if I may ask you right a lot of time with people you never thought who are struggling with ALS to come and now to put your hands together and you would ever meet, yes, I'm talking about speak about it on such a day! applaud their enormous sacrifice and they home care! And you learn a new alphabet go by the names-g37r and g93a model Before I talk about living with ALS, I would like, CCAC; OT; PT; ADP; PSW; ATC, and yes - I am talking about the ALS SOD1 like to take on the role momentarily as many other acronyms which will make you mouse research models. Thank you. spokesman for everyone who currently has feel like you really are living longer. Yo u ALS across Canada and for those who will I guess we should get back to talking about will find yourselves in a whole new world soon be diagnosed. On their behalf, I living with ALS. When you start such a dis- with a variety of new challenges which will would like to express our profound appre- cussion you really find few of us who want create new sensitivities. ciation to the thousands of men and women to talk about this disease or be defined by For some of us, our sensitivities will change whose names and faces we don't know, but its characteristics. Many of us start our ALS overnight. When I attended Toronto's first whose contributions and encouragement journey the same way - by wandering in the fundraising walk at Seaton park, I am sure established the building blocks for our cur- wilderness. For some people it can take as that many people attending the walk found rent success. This expression of gratitude much as 14 months to be diagnosed. Yo u those informational signs very motivation- also includes everyone in this room. All the wander from doctor to doctor not knowing al, inspiring and disturbing. Those of us volunteers and those who work for the what is wrong. I first noticed the onset of recently diagnosed with ALS found them society whom I call - the mercenaries (my the disease in August of 1999 with a loss in devastating. I would like to propose that in own idiosyncratic whimsy). You have not my left bicep - four to seven per cent. future walks we include some positive only contributed to the current success When enough items have been crossed off statements. I would like to make a few that the society is experiencing but are your list you will end up being in a room s u g g e s t i o n s : developing the new building blocks that with someone like Tony Newell ( a delight- will be used for our future success. ful human being) who will stick needles in Continued Pg. 11 H o w e v e r, I have a little problem. Could I you for several hours. Later they will con- please ask you all to stand up. Come on firm the suspicions that everyone already June is ALS Awareness Month

David S. Cameron, national exec- tive treatment and an ultimate of hope for ALS because of its Businesses and families can utive director of the ALS Society cure." fragile appearance yet hardy organize teams to take part in the of Canada says, "We desperately nature. The Cornflower grows WALK for ALS. It has become a The month of June has been des- wild across most of Canada and is need a series of breakthroughs, ignated for the ALS Society of great way to show support for an long-lasting with striking blue, and that requires more funding to Canada's "Flower/Awareness Day" employee or a family member star-like blossoms. push the research closer to a campaign. During the Flower Day who has ALS. The key goals for result that benefits those diag- campaign, volunteers can be seen Another popular campaign held the campaign consist of increas- nosed. Presently research into throughout communities distrib- during the month of June is the ing public awareness about ALS this catastrophic disease is under- uting Blue Cornflowers and seek- WALK for ALS, a program co-ordi- and helping to support local serv- funded. Awareness and fundraising out donations to help fund ALS nated and supported nationally ices that give aid to those living ing events can change that. Every research. The Blue Cornflower and executed throughout the with ALS, their families and care- donation gets us closer to effec- was chosen as the national symbol provincial units across Canada. givers.

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Special Thanks to ALS Award Winners for Outstanding Contributions | Summer 2005

The ALS Society of Canada held its annual awards Susie Faulkner has been recognized with an banquet on April 30th and showed its apprecia- Honorary Life Member Award for her outstanding tion for all the individuals who contribute their volunteer contributions. time and efforts to make each day the best possible day for people living with ALS. The follow- Faulkner has volunteered with the ALS Society of ing individuals and provincial societies were hon- Nova Scotia for more than nine years and has ored for their exceptional contributions to the served as a board member of the ALS Society of ALS Society. Nova Scotia for the past six. Her first ALS fundraiser was a weekly charity bingo; from there Mary Lipsey, an active member in the ALS Society she continued to run the bingo nights for two of Alberta, received an Honorary Life Member nights a week for four years. Since then, she has Award for her outstanding volunteer contribu- contributed her time to many fundraisers and Jim McLaughlin (right) receives the Wi l l i a m tions. Honorary Life Members are named in activities helping to raise funds and awareness of Fraser Leadership Development Award from Ti m recognition of extraordinary volunteer contribu- ALS. Faulkner also volunteers her time at the ALS Stauft (left) ALS Society of Alberta president and tion to the ALS Society of Canada. Up to three clinic in Halifax where she offers support and ALS Canada board member. people may be named in any given year. encouragement to the staff. Consideration may be given to former ALS Society staff of Canada and provincial society staff. "For the past nine years, she has given countless Honorary Life Member Awards will be given out at hours in the service of Nova Scotians with ALS. the individual's provincial units. When others grew tired of volunteering their time, Susie continued," says Susan Rahey, neuro- Lipsey has been involved with the ALS Society of physiology program co-ordinator, Queen Elizabeth Alberta since she lost her husband Bill to ALS II Health Sciences Centre, Halifax, Nova Scotia. almost seven years ago. She promised Bill she would do everything she could to increase aware- Jim McLaughlin was presented with the Wi l l i a m ness of ALS and she certainly has. Lipsey volun- Fraser Leadership Development Award for his out- teers her time three to four times a week for at standing leadership skills and dedication to the least four months out of the year. She has been ALS Society of Alberta and people living with ALS. Dora Redman, recipient of the Mary Pollock involved with Betty's Run, WALK for ALS, organiz- WALK for ALS Volunteer Award (left) and ALS Ontario president and ALS Canada board ing casino trips and helping out with any task that This award is given annually in recognition of out- member Nigel Van Loan. she is asked to do. According to the people who standing leadership development initiated and work with Lipsey at the ALS Society of Alberta, implemented by an individual, chapter or unit. It she makes their jobs so much easier and can be may be awarded to a volunteer, or to individuals counted on to get any job done. working in collaboration to develop the organization at a local, regional, provincial or national "Mary can still be counted on to pitch in when and level. The award honors William Fraser, a past where needed. Mary promised Bill she would president of the ALS Society of Canada who died help; she has kept that promise and now deserves in 2000. Bill valued leadership and organization- the thanks and recognition of this Honorary Life al development highly, and exemplified both in member award," says Mary Hatcher, executive his contributions to our organization. This award director of ALS Alberta. is open only to volunteers.

M u r ray Jordan has been recognized with an McLaughlin joined the ALS Society of Alberta in Honorary Life Member Award for his outstanding October of 1996 as a member of the board of Left to right - Sharon Bardsley ALS BC board m e m b e r, Dawn Wilkinson (wife of Rick Wi l k i n s o n ) volunteer contributions. directors and quickly began to make a difference and Ben Wendland, ALS BC and ALS Canada within the society. In 1998, he was elected pres- board member smile for the camera. Dawn Jordan, a past president of the ALS Society of ident of the ALS Society of Alberta. As president, accepts the Exceptional Public Awareness Aw a r d on behalf of the On a Roll for ALS Team. Manitoba, member of the board of directors and McLaughlin was actively involved in the develop- chair of a number of committees has been ment, review and implementation of the ALS involved with several volunteer initiatives in rais- partnership agreement, took on committee roles ing funds and awareness for ALS. He has showed and responsibilities and took a lead role in gover- unwavering support to the society and to people nance for both ALS Alberta and ALS Canada. He living with ALS. Even after losing his wife to ALS has been extremely dedicated to the ALS Society he continued to attend group meetings and pro- of Alberta and to those people living with ALS. vide counseling to others. Currently, he is a volunteer maintenance person at the Brummitt- D o ra Redman of London, Ontario was awarded the Feasby ALS House as he continues to give his time Mary Pollock WALK for ALS Volunteer Award. This in his retirement. "Murray is easy going, enjoys a award is given annually with the generous support Marcel Bertrand (left) president of A L S good laugh, but most of all he is committed to the of the Pollock Family and honors Mary Pollock who Manitoba and ALS Canada board member ALS cause. He is most deserving of being an died of ALS in 2000. The award is given to out- Diana Rasmussen (right) executive director of ALS Manitoba accept the Brett Ye r e x Honorary Life Member," says Diana Rasmussen, standing WALK for ALS volunteer(s) who achieve Exceptional Advocacy Award on behalf of the executive director, ALS Society of Manitoba. outstanding contributions and achievements in Brummitt-Feasby House Committee from Lori Weir (middle) unit director of ALS New developing the walk to its fullest potential. There Brunswick and A L S Canada board member. ALS. Three letters that change people’s lives. FOREVER. 8 coast-to-coast.qxp 6/21/05 2:08 PM Page 9

Special Thanks to ALS Award Winners for Outstanding Contributions | Summer 2005

are two categories of eligibility: 1) individual and journey which caught the attention of Wi l k i n s o n . 2) a group of two or more people. With Pellatt's health fading, he was not able to participate in the On a Roll for ALS 2004 so he Redman has contributed much of her time and handed his "torch of hope" over to Wilkinson who efforts to raising funds and awareness for ALS. completed the eight-day-journey on June 11 2004 She has been co-ordinator, and the corporate and raised more than $60,000 for ALS. Sadly, chair of the WALK for ALS since it began in London Wilkinson lost his battle with ALS and passed in 2001. The London WALK for ALS consistently away on February 1, 2005. raises more money for research patient services than other cities. The most recent walk, in 2004, "Rick Wilkinson has left a legacy to the ALS raised more than $175,000. With her exceptional Society of British Columbia. His courage and organizational skills she has worked hard to tenacity as part of On a Roll for ALS will be increase the size of the walk and obtain corpo- remembered. The public awareness and funds rate and local sponsors thereby gaining awareness raised though his willing participation within the Shirley Smallwood (left) receives the and funds for the ALS Society. Myra Rosenfeld Volunteer Award from society will benefit many people living with ALS Lori Weir. (right). in British Columbia now and in the immediate "Dora spends many hours each day planning and future," says Paul Hiller, marketing and develop- organizing. She has untiringly worked to raise ment manager, ALS Society of British Columbia. money for research and patient services in ALS London chapter in Ontario," says Ruth McFeat, Pierre Lacroix received the Exceptional president of ALS London Chapter. Fundraising Program Award for his exceptional dedication and support. This award recognizes Chris Mann of Calgary, Alberta has received the excellence in a fundraising program implemented Exceptional Public Awareness Award for his out- during the past year and is given to an individual standing contribution to raising awareness of ALS. or project team who developed an innovative This award recognizes an exceptional program idea and attains or exceeds a fundraising goal. It that aims to educate and increase public aware- can be a new or continuing program. There are ness of ALS. Public awareness activities may two categories of eligibility: 1) individuals and 2) include liaisons with media, co-ordinating public a group of two or more people. Shannon Spence (right) receives the awareness displays, speaking to the public or Exceptional Fundraising Program Award other organizations about ALS. There are two Since being diagnosed with ALS in 2001, Lacroix from Lori Weir on behalf of herself categories of eligibility: 1) individual and 2) a has sent more than 2000 letters in and around and her father, Gary Spence. group of two or more people. Québec City raising $48,000 for ALS. He is an avid participant in all of the ALS Society's of Québec's Since Mann was diagnosed with ALS in 2001, he activities. He has delivered speeches and confer- has made himself available for public speaking to ences on ALS leading to increased awareness of raise awareness about ALS. He has been the this disease. ambassador for Betty's Run for ALS and has appeared on television to promote the run. In " M r. Lacroix's positive attitude and contribution to addition, he performed in a PSA which became the ALS Society goes beyond the important part of the ALS Canada Campaign and has partic- fundraising he does on our behalf. He is an inspi- ipated in several media interviews and he has ration to the office staff, and to other people given presentations on topics such as "The five who have ALS and to their families," says Madame things a person with ALS wants his doctor to Lise Deschesnes, president of the ALS Society of k n o w." Mann provides support to others living Québec and ALS Canada board member. Pierre Lacroix receives the Exceptional with ALS and has increased public awareness of Fundraising Award Program Award from ALS ALS greatly. Gary and Shannon Spence received an Québec president and ALS Canada Exceptional Fundraising Program Award for their board member Lise Deschesnes. "He is an amazing inspiration to both students and outstanding fundraising efforts for ALS. seasoned health-care professionals alike," says Mary Hatcher, executive director of the ALS The father and daughter team have played an Society of Alberta. active role in many activities in raising funds for the ALS cause. The Spence team has been active- Rick Wilkinson, Mike Pellatt and the On a Roll ly involved with WALK for ALS, the first annual for ALS Te a m , received the Exceptional Public Evening of Hope gala dinner theatre that raised Awareness Award from the ALS Society of Canada. more than $18,000 in 2004, and with Shannon's Their extraordinary journey from Campbell River help - Gary developed, organized and promoted to Victoria B.C. to raise funds and awareness for Links for a Cure Golf Tournament that raised ALS was a huge success. $7,850 in 2004 to provide support to people living with ALS. The Spence's have been heavily Elizabeth MacDonald (middle) and Jane Keith On a Roll for ALS began with Mike Pellatt, who involved with fundraising for ALS. (right) accept the Exceptional Public Awareness Award from Tim Stauft, president was diagnosed with the disease in 2001. In May of and unit director, ALS Alberta, on behalf on 2003 he completed the first On a Roll for ALS Continued Pg. 10 their brother, Chris Mann who was unable to attend the awards ceremony. ALS. Three letters that change people’s lives. FOREVER. 9 coast-to-coast.qxp 6/21/05 2:08 PM Page 10

Coast to Coast | Summer 2005

Genetic Brummitt-Feasby ALS House Testing for ALS ident of community care Dr. Sharon Fred Feasby. Both parents were Macdonald, and national executive cared for in the home at the end of We have pub- director of the ALS Society of their lives. lished a new Canada David S. Cameron. Also "From the beginning, this has been a fact sheet enti- present at the event were members dream come true for the society, tled Genetic of ALS Manitoba staff, those living and a major item on our wish list Testing for ALS with ALS, and their caregivers. that, even a couple of years ago, (fact sheet # The house initially opened on seemed like an impossible dream," 13). It is available online at October 11, 2001, following 14 says Diana Rasmussen. www.als.ca. months of extensive renovations to a Wi n n i p e g - Our research Left to right - David S.Cameron, area bungalow donated updates and fact Marcel Bertrand and Diana to the ALS Society of sheets have now Rasmussen. Manitoba for this pur- been translated January 14th of this year marked pose. The Brummitt- into French. the official opening of North Feasby ALS House was They can be willed to Faith Johnston America's first residence for people viewed online at and Lynn Brown by their living with ALS. In attendance were www.als.ca. stepmother Dorothy ALS Manitoba executive director Brummitt who died of Diana Rasmussen, president and ALS in June 2000. In One of the fully equipped bedrooms in the board chair of ALS Manitoba Marcel turn, the sisters donated Brummit-Feasby ALS House. Bertrand, Manitoba Minister of the house to ALS Health the Hon. Tim Sale, Wi n n i p e g Manitoba later in that year in mem- Continued Pg. 15 Regional Health Authority vice-pres- ory of their stepmother and father,

Special Thanks to ALS Award Winners Continued from Pg. 9

Shirley Smallwood r e c e i v e d gone from one to five walks in honor the work and commitment the Myra Rosenfeld Vo l u n t e e r two years. She has worked tire- of Brett Yerex who died in Award. Her outstanding volun- lessly to provide support to the January of 2004. There are two teer leadership skills have pro- ALS Society and people living categories of eligibility: 1) indi- vided exceptional support to with ALS. vidual and 2) a group of two more the ALS Society of New people. Brunswick. The Myra "The ALS Society of New Brunswick would not exist as it Rosenfeld volunteer award The Brummitt-Feasby house offi- does today without Shirley's recognizes exemplary volun- cially opened its doors on January teer leadership. It is awarded efforts; this is not just a plati- tude. Ask any board member or 14, 2005 and is the first of its kind Left to right - Mike Gardner, ALS board member, for an outstanding contribu- in North America. The house pro- Conservative MP, John Reynolds, Sunshine tion to the advancement of volunteer and they'll tell you the vides clients with ALS the oppor- Coast-Sea to Sky Country and Wendy Magee, the mission and goals of the reason they are involved with the executive director, ALS British Columbia. tunity to live in a peaceful and ALS Society of Canada by a vol- ALS Society of New Brunswick is "Gary Spence has been an unteer at the national, unit because of Shirley Smallwood," safe environment with care and extremely active and interested and/or chapter level. This award says Lori We i r, unit director of support for anything they may individual in the ALS Society of honors Myra Rosenfeld, a dedicat- ALS New Brunswick and ALS n e e d . Nova Scotia. He has given ed volunteer who died from ALS Canada board member. unselfishly of his time and abili- "This advocacy work took organi- in 1990. The ALS Manitoba Brummitt- ties to advance the cause of ALS zation, diligence, time, detail Since Smallwood's first ALS Feasby House Committee and to work toward the mission and sometimes much frustration, Society of New Brunswick meet- received the Brett Ye r e x of our society to eradicate the and now we hope others will be ing in January 2000, she has been Exceptional Advocacy Award for disease. Gary's daughter Shannon able to do the same. This group involved in several activities improving the quality of life for of individuals has consistently has also been an intricate compo- which have helped to raise funds people living with ALS. The Brett pushed forward with a concept of nent of all efforts which have and awareness of ALS. She is the Yerex Exceptional Advocacy been made over the years by support group founder/facilita- award recognizes an exceptional the highest quality of service Gary and herself," says Briann t o r, director of client services, advocacy initiative that seeks to delivery to enhance quality of life Smith, president ALS Nova Scotia, organizer of an Atlantic Re g i o n improve the quality of life of a for people living with ALS," says unit director and ALS Society of Volunteer Conference and provin- person or persons with ALS. The Nancy Chapel, finance chair, ALS Canada board member. cial walk co-ordinator which has ALS Society named the award to Society of Manitoba. ALS. Three letters that change people’s lives. FOREVER. 10 coast-to-coast.qxp 6/21/05 2:08 PM Page 11

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ALS Canada Symposium - Unmasking ALS Continued from Pg. 7

1. You will spend more time dress and feed me every day. disease somehow makes you a very unique time in our life. with your family. And he sits in his high chair, clever enough to convince And we each have our own indi- getting much the same. We other people to do this for you. vidual response to the severe 2. No more cutting the grass or will gradually undo this early limitations and exclusions that cooking for you! I guess we should get back to training. are gradually dictated. talking about living with ALS. 3. The medical profession will 7. I also think we should have Humanity has always had a I mentioned earlier that you assess you as intelligent, some informational signs about wide variety of responses to the will spend a lot of time with kind, considerate and some of the myths and miscon- same stimuli, for those of us your family. But with ALS noth- thoughtful. ceptions that one finds with with ALS … there's no differ- ing is the same. How can I ALS. One frequent myth is that ence. 4. ALS will not bankrupt you … explain it? With your family ALS people suffer from fatigue. immediately. You find out who you are, what you are of their society but not Now I discussed this at a recent you believe and how your char- really in their society - every- 5. Riluzole will darken, soft and support meeting and everyone acter has really been formed. thing is just out of reach. there agreed that I should final- thicken your hair. You will find out the length and ly dispel this myth: ALS people With ALS there are a lot of breadth of your philosophical 6. ALS fathers raise sexist do not suffer from fatigue - we tears. But we must gather our foundation, your spirituality, children - I guess I should are just lazy! How lazy are we? strength from these tears to and the strength of your reli- explain. My 21-month old Why I'm so lazy I can't even create and establish our future gious beliefs. You will also find son spends a lot of time near bother feeding myself, brushing building blocks for success. out how well your friends and me every day. He sits in his my teeth or combing my hair. I family can cope. Thank you. high chair, I sit in my chair. don't even want to wipe my He watches others wash, own … Strangely enough, this ALS comes to every one of us at Copyright© williamweiroct2004

Reserve these Dates

The Canadian Hospice Palliative Care A symposium entitled Amyotrophic Lateral 7574 or email anne.pinsonneault@feeling- Association and The Palliative Care Sclerosis: Causes and Therapeutic prod.com. This event is addressed to sci- Association of Alberta present a confer- Perspectives - will be held in Montréal entists, researchers and students. The ence on - Kaleidoscope: Dialogue & September 9 & 10. Invited international symposium is sponsored by Fondation Diversity in Hospice Palliative Care in speakers include: Heather Durham, André Delambre and the Montréal Edmonton, Alberta, September 25 - 28. Montréal Neurological Institute, McGill Neurological Institute and Hospital, McGill University; Michael Strong, University of University. Registration is free but limited The Canadian Home Care Association will Western Ontario; Jeff Rothstein, Johns with respect to the number of participants be holding its 15th annual national confer- Hopkins School of Medicine; Jean-Pierre so please register early. ence from November 3 - 5 in Banff, Alb- Julien, Centre de recherche du CHUQ, erta. The theme is 2005 Home Care Université Laval; Don Cleveland, Summit, A Pan-Canadian Consultation. For University of California at San Diego; more information or to register contact Patrick Aebischer, Swiss Federal Institute [email protected]. of Te c h n o l o g y, Lausanne; Janice ALS Society Staff Announcements The ALS Society of Canada's Leaders' Robertson, University of Toronto, and a Seminar for the board of directors will host of others. Topics covered at the sym- The ALS Society of Canada has a new take place November 4 - 6 at the Bank of posium will include: Genetics of Motor director of development - Diane Montreal - Institute for Learning, 3550 Neuron Disease; Neuron-Glial Interactions Gillespie. Another new hire in the devel- Pharmacy Avenue, Scarborough, Ontario. in ALS; Mechanisms of Motor Neuron opment office is Joseph Mangoff who is Disease; Therapeutics: Issues in Clinical The 16th International Symposium on with us on a six-month contract as a spe- Trials and Drug Development; and, cial event co-ordinator. ALS/MND will be held in Dublin, Ireland, Therapeutics: New Techniques for December 8 -10. Hosting the symposium is Therapeutic Delivery. the Irish Motor Neurone Disease The ALS Society of British Columbia has Association. The symposium will focus on The symposium organizers are Jean-Pierre a new executive director - We n d y areas of general interest to all delegates; Julien, Heather Durham and Gilles Magee. parallel sessions/workshops focusing on Cloutier (scientific director of Fondation specific scientific and clinical/care issues; André Delambre). Deadline for submis- The ALS Society of Ontario has a new and, scientific and clinical poster sessions. sions of poster abstracts is June 30, 2005. regional office assistant - Monika For more information go to: www.alsmn- To register: http://www. f o n d a t i o n a n- Samoila. dalliance.org/symposiums/index/html. dredelambre.com and for more information, contact Anne Pinsonneault 450 973- Welcome aboard!

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New Research Grant for Dr. Jean-Pierre Julien

Roberta Friedman, PhD, ALSA Research Department Information Co-ordinator D r. Jean-Pierre Julien, an ALS Society of ease. The cellular protectors called chaper- granins are important to this toxicity of Canada board member and a prominent ALS ones may also have roles in ALS. mutant SOD1. They will induce increased researcher at Laval University Re s e a r c h production of chromogranins in the spinal What are chromoganins? Centre in Québec has been awarded a motor neurons of mice bearing the SOD1 research grant from The ALS Association in Chromogranins are molecules made by nerve mutation, and see if this exacerbates their the United States. "Role of Chromogranin- cells that usually aid production and packag- disease. Also, they will suppress chromo- mediated Secretion of Superoxide Dismutase ing of other proteins. Investigators working granin production, to see if secretion of Mutants in ALS Pathogenesis," is the title of with Julien have discovered that chromo- mutant SOD1 is suppressed, and whether the research grant. The ALS Society of granins are binding to mutant SOD1, the pro- Canada agreed to co-fund the grant with tein linked to inherited forms of ALS. The The ALS Association after the grant was two proteins appear together in spinal cord m a d e . of mice with mutant SOD1. Cells grown in laboratory dishes that produce more than A new suspect in ALS prompts Julien and col- the usual amount of chromogranins also leagues to delve further into the role played secrete mutant SOD1. by chromogranins. These components of cer- Julien and his team have found that when tain nerve cells appear to associate with the mutant SOD1 is secreted in cell culture, an mutated ALS enzyme, SOD1. New ALS inflammatory response is produced in mutant mice will be made that make more microglia cells, and motor neurons die. than normal amounts of chromogranins, to see if these mice will show worsened dis- The investigators will find out if chromo- Cognitive Changes may be Associated with ALS; Winner of Essey Award Reviews Findings at American Academy of Neurology Annual Meeting

The Sheila Essey Award for ALS Re s e a r c h into ALS," said ALSA Science Director Lucie was inaugurated in 1996 by ALSA in part- Bruijn, PhD. Strong has served on ALSA's sci- nership with AAN to acknowledge and honor entific review committees. an individual actively engaged in ALS scien- The award goes to Strong for his work to tific research who has made significant con- advance the understanding of this devastat- tribution to the search for the cause, pre- ing disease that produces progressive weak- vention or cure for the disease. Named for ness ending in paralysis and respiratory fail- Sheila Essey who succumbed to ALS in 2004, ure. Strong is director of the multidiscipli- this important award includes a $25,000 nary ALS clinic at the University of We s t e r n prize to be used toward continuing ALS Ontario, chief of neurology at London research. Three of the past winners have Health Sciences Centre, and an investigator established Sheila Essey fellowships at their at the John P. Robarts Research Institute in institutions to help fund junior researchers London, Ontario. to induce them to work in the field of ALS. Today the Sheila Essey Award has been char- Strong is recognized for his translational Contrary to prior concepts, ALS may not acterized as the most prestigious award in approach to the puzzle of ALS. Not only is just kill the motor neurons that contract the world in the field of ALS research. Strong respected for expertise in the basic muscles, according to recent findings by biology of the motor nerve cells affected by "The work of Dr. Strong and other Canadian researcher Michael J. Strong, MD, ALS, but also for his clinical investigations researchers are bringing us closer to under- FRCPC, winner of the 2005 Sheila Essey into the possible link of this motor neuron Award for ALS Research presented by The standing Lou Gehrig's disease," said Richard disease to frontotemporal dementia (FTD). ALS Association (ALSA) and the American P. Essey, ALSA national trustee. "On behalf This link may provide new knowledge of the Academy of Neurology (AAN). of The Essey Family Fund, I am proud to add disease process that could lead to innova- D r. Strong's name to a list of pioneer These new findings are beginning to influ- tive treatments. researchers who are bringing us closer to ence how clinicians view the nerve-wasting finding a solution to this devastating dis- "This award is a tremendous recognition of disease. Many people living with ALS also e a s e . " our work, and that of my colleagues in try- show subtle changes in cognition. Those ing to understand the nature of this devas- changes can be associated with microscopic "It is wonderful to acknowledge the impor- tating illness," Stong said. damage to the responsible lobes of the tant contributions that Michael Strong has b r a i n . made to both clinical and basic research Continued Pg. 14

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Former Students Celebrate Life of Te a c h e r B r u m m i t t - Feasby ALS House

Joyce Pirnak a former edu- take them," Pirnak said. even performed a Greek Continued from Pg. 10 cator who has taught dance. "I was deeply The Brummitt-Feasby House represents a partner- The reunion was arranged approximately 5,000 high touched by the program ship with the Winnipeg Regional Health Authority with the help of former stu- school students in organized by my former stu- and the ALS Society of Manitoba. Operational fund- dents who had stayed in Edmonton and who is now dents," said Pirnak. ing - staffing for the house - is subsidized. As the res- touch with Pirnak over the living with ALS wanted to idence is run under a collaborative budget, organiz- years. Fern Snart, the dean of the know what had become of ers are responsible for the cost of maintaining the faculty of education at the the students she once " We all in our lives need house and equipment. University of Alberta, spoke taught. somebody who gives us that and a presentation was warmth and comfort and "This entire project reflects the enormous generosi- Pirnak was diagnosed with given by former Elk Island support and encourage- ty and community-mindedness for which ALS more than two years Schools superintendent ment, and Joyce did that," Winnipeggers and Manitobans are renowned." Not ago. She is no longer able Terry Gunderson. There said Lance Lillies, a former only was the house donated, but most of the labor to use her arms or legs. She was also a video presenta- student who was in Pi r n a k ' s and many materials for the renovations were donat- had a strong desire to tion that featured an inter- first class in 1971 and who ed. Many other donations of services, furnishings, reunite with her former stu- view with Pirnak and a vari- stayed in contact with her and other items have come forth as well. dents, and a reunion took ety of photographs. Five place on Saturday, March 19 ever since. Community response has been tremendous," hundred peoples were in at the University of Alberta. explains Rasmussen. The reunion was a well- attendance. The event was "One of the greatest thrills organized success. Some also a fundraiser for a bur- The Manitoba Renovation Contractors Association is meeting students for the students delivered tributes, sary for educators that is donated much of the labor required for the renova- first time and having a one read a poem that she being set up in Pi r n a k ' s tions, which were spearheaded by Marcel Bertrand vision for where you can had written, and another name. who worked in the construction industry and was diagnosed with ALS in 2000. The 1,400 square-foot house was built in 1967 as a Canon Canada and McDonald's six-room, three-bedroom bungalow. The current market value is more than $250,000 inclusive of Sponsor 2005 WALK for ALS equipment. The renovations, valued at $135,000 involved gutting the existing house and configuring it The ALS Society of Canada for the ALS Society of to meet the special needs of people living with ALS. In addition, 600 square feet were added. is proud to announce that Canada. "The WALK for ALS Stan Skorayko, vice presi- Canon Canada and is an excellent opportunity dent of corporate commu- The renovations included the addition of wheelchair McDonald's Restaurants of for family and friends to nications for Canon Canada ramps, wider doors with low sills, call buttons in rally around someone living Canada Limited, have both Inc. "We hope the funds bedrooms, special bathroom and bathing fixtures, with ALS and do something agreed to be national spon- raised through the walks upgraded electrical to accommodate special equip- positive and healthy to help sors of the 2005 WALK for will help find a cure for the ment for patients, and a large sunroom at the rear o u t . " ALS. Canon and McDonald’s , more than 3,000 Canadians of the house. along with families, " W ith the help of Canon who are affected by this friends, and volunteers, are The house has three long-term beds, one respite Canada, McDonald's and devastating disease." putting their best foot for- the 10,000 volunteer walk- bed, and room for three additional overnight or ward this summer and fall ers (including those living "I've seen first hand the assessment patients. There is a total of 14 staff by raising funds for with ALS and their families, support people living with members who care for the patients-including a research and local support friends and caregivers), ALS and their families house co-ordinator, Registered Nurse, and health- services for ALS. more than $1.6 million was receive through their local care aides. There is currently one long-term client with ALS living in the house, and there have been a The WALK for ALS is raised from last year's WA L K ALS societies. McDonald's designed to raise money to in 54 communities nation- Canada and our national great number of respite patients since the accom- support those living with wide," said Wi e s e n f e l d . network of local modation opened in 2001. this devastating disease, to "Our goal is to beat that owner/operators are very raise awareness of the dis- record at the 2005 WALK for proud to once again sup- 2004 Walk Top Fundraisers ALS. ALS can affect any- ease, and to raise funds for port such a tremendous one, regardless of the age It is with great pleasure that we announce the ALS research. The spring grassroots organization," group, we need to come three highest fundraisers from across Canada WALKS began in Cobourg, said Richard Ellis, vice pres- together as a community from the 2004 Walk. Ontario in May and will con- ident, communications & and help find a cure." tinue throughout the sum- public affairs, McDonald's Murray Dewis - London mer and fall across Canada. To d a y, there are approxi- Restaurants of Canada mately 3,000 Canadians L i m i t e d . Moshe Ronen – Toronto " We are extremely excited who live with ALS. Among For a complete listing of Bob Crozier – Hamilton to have Canon Canada and them, two to three will die McDonald's Canada as the WALKS taking place every day. For their efforts these individuals will receive national sponsors for the across Canada check out a Canon ZR80 digital camcorder courtesy of WALK for ALS," said "Canon Canada is pleased to our web site link at Matthew Wi e s e n f e l d , provide ongoing support for h t t p : / / w w w. a l s . c a / w a l k / w our national sponsor Canon Canada. development co-ordinator the WALK for ALS," said a l k l o c a t i o n s . a s p x .

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Resources - Luckiest Man: The Life and Death of Lou Gehrig

ALS is associated with the portrays Gehrig as a human friction between Gehrig and New York Yankees first base- being who, throughout his Babe Ruth. man Lou Gehrig who played in life, was admirable while not In the last chapters of the a record 2,130 consecutive being perfect. biography, in which Gehrig is games before the disease Luckiest Man: The Life and succumbing to ALS, the med- forced his premature retire- Death of Lou Gehrig includes ical aspect of his life story is ment in 1939. letters that Gehrig had writ- presented with compassion. Jonathan Eig, the author of a ten to his doctor, Paul O'Leary. new biography on Lou Gehrig - These letters are the only The biography-published in has been receiving praise for available record of Gehrig's April 2005 is available for his work. Eig's biography last days, and detail his $37.50 in book or cassette addresses different aspects of aches, pains, and strong form. The running time for Gehrig's life before he was desire for a cure. the audio version is approxi- struck by ALS, with his ath- Luckiest Man follows Gehrig's mately six hours, and can be leticism and career as a pro- family relationships. purchased from www. s i m o- fessional baseball player. Eig Attention is also given to the nandschuster.ca.

ichannel Special Presentation of Elizabeth’s Hope

ichannel's spe- Monday June 27th Access Communications: 127 cial presentation 3:00 AM, 9:00 AM, 3:00 PM Amtelcom: 161 of the documen- (all times EST) B e l l E x p r e s s Vu: 514 tary "Elizabeth's ichannel is the only television channel that Cogeco: 136 Hope," features brings its viewers programming from Eastlink: 151 an additional Canada and around the world, which deals MTS: 282 interview with with the political and social issues that Mountain Cable: 177 E l i z a b e t h affect both the individual and society. Rogers: 197 Grandbois. The Programming is designed to address issues Sasktel: 105 interview is conducted by Christopher with a depth not found on any other televi- Shaw: 95 Heard, ichannel's host of "Investigative sion service. ichannel uses drama, docu- Affairs," a one-hour documentary show, as mentaries and discussion to engage viewers Source Cable: 133 well as "The Film." on subjects that affect their everyday lives. Starchoice: 593 Te l u s : 1 1 5 Grandbois discusses how her painting and How to view ichannel: Videotron: 146 writing contribute to her well being as well as her commitment to live life to the fullest ichannel is a digital specialty channel avail- For more information: while living and dealing with ALS. able through all the major cable and satel- lite television service providers: Phone: (416) 756-5505 ext. 5512 e-mail: [email protected] Airtimes: Web: www.ichannel.ca Sunday June 26th 8:00, 11:00 PM

Cognitive Changes may be Associated with ALS Continued from Pg. 14

"It will allow us to move forward in structural proteins that allow neurons to now to define the extent of abnormal determining whether our current find- maintain their lengthy connections to cellular handling of tau in ALS and deter- ings are unique and potentially diagnos- m u s c l e . mine if there is a unique molecular sig- tic of FTD in ALS," Strong said. His current project, "A Molecular And nature of cognitive impairment in ALS. Strong and his colleagues have pointed Neuropathological Characterization Of Another Canadian researcher received to changes in brain tissue from ALS The Cognitive Impairment Of Sporadic the Essey Award in 2000, Dr. Jean-Pi e r r e patients that may correspond to the clin- Amyotrophic Lateral Sclerosis," funded J u l i e n . ical signs of FTD. His basic studies on the by ALSA and the ALS Society of Canada, inner dynamics of motor neurons mean- focuses on abnormal deposits within Reprinted with permission of The ALS while show that ALS may affect the cells of a protein called tau. The aim is A s s o c i a t i o n .

ALS. Three letters that change people’s lives. FOREVER. 14 coast-to-coast.qxp 6/21/05 2:08 PM Page 15

Coast to Coast | Summer 2005

Something Important to Think About Raising funds in Newfoundland

Making a planned gift to the ALS Society is • Gifts of residual interest - You can estab- easier than you think! Not only are there lish a trust fund using cash, real estate or several convenient options but your gift other assets. While you receive the can be specifically designated for income generated from the trust and the research, services, the ALS Society of potential tax benefits, the ALS Society Canada, or for one of the provincial ALS Society partners. It's completely up to receives the principle upon your death or you. that of your named beneficiary. • Publicly listed securities - Federal legis- Your planned giving options include: lation has made the donation of stocks, • Bequests - A donation of cash, property bonds, mutual funds and other publicly Calvin Cole, whose wife Patricia has ALS, accepts a cheque from Lorinda or other assets made through your will. traded securities to charitable organiza- Skiffington, an employee with the • Life insurance - You can make the ALS tion a very attractive option. Society the beneficiary of an existing North Atlantic Refining Limited (NARL). If you would like further information on policy or create a policy specifically for Employees from NARL raised more than the ALS Society's planned giving program us. $10,000 for ALS Newfoundland, from a • Gift annuities - Can provide a tax free please contact Diane Gillespie, director of woodworkers raffle and the Employee source of income to you while still mak- development at 1-800-267-4ALS (4257) x Recreation Association ladies dessert ing a gift to the ALS Society. 228 or [email protected] money.

Peoples Drug Mart Teams up with the ALS Society of British Columbia Peoples Drug Mart, a group of privately owned and operated community drug stores is teaming up with the ALS Society of BC. A few of the fundraisers helping to raise funds and awareness of ALS include, Stars of Hope for ALS selling for $2, ALS coin boxes placed in every store and $1 of every People First Vitamins sold in March. "We have strong faith that our two organizations will grow into an effective partnership that will help raise additional awareness, funds and offer support to people living with ALS,"says Ed Sue, marketing and advertising manager of Peoples Drug Mart.

Contact ALS • 1-800-267-4257

David S. Cameron, National Executive Director...... [email protected] ...... ext. 206 Enzo Raponi, Executive Administrative Assistant ...... [email protected] ...... ext. 205 Diane Gillespie, Director of Development ...... [email protected] ...... ext. 228 Matthew Wiesenfeld, Development Co-ordinator ...... [email protected]...... ext. 202 Joseph Mangoff, Special Event Co-ordinator ...... [email protected] ...... ext. 210 Darija Ilic, Manager, Fund Development Office ...... [email protected]...... ext. 203 Claudia Daniel, Donations Co-ordinator ...... [email protected] ...... ext. 204 Bobbi Greenberg, Director of Communications...... [email protected] ...... ext. 208 Jane McCarthy, MSc, MPH, Director of Services and Education [email protected] ...... ext. 230 Karen Hunter, CMA, Manager, Finance and Administration ...... [email protected] ...... ext 207 Indra Patterson, Administrative Assistant ...... [email protected]...... ext. 201 Paul Skinner, Donations Clerk/Volunteer

ALS Society of Canada • Société Canadienne de la SLA 265 Yorkland Blvd., Suite 300, Toronto, Ontario M2J 1S5 Toll Free: 1-800-267-4257 Toronto: 416-497-2267 Fax: 416-497-1256 Email: [email protected] Website: www.als.ca Charitable Registration:106708977RR0002

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ALS. Three letters that change people’s lives. FOREVER. 15