Newslink Spring 2013

Spring 2013
Newsletter of the Amyotrophic Lateral
Sclerosis Society of British Columbia
In this issue
1 Prominent Canadian
ALS Research in the
Past Year
2 Travel Tips
4 Wills: Do We
Need Them?
5 The Cornflower Fund
7 2013 Fundraising
Events
14
Events Around
the Province
15
Support Groups
16
ALS Society of BC:
Awards Ceremony
20 Victoria Chapter
Events & News
22 North Central Island
Chapter Events &
News
23 Overview of ALS
Society of BC Patient
Services Programs
Prominent Canadian ALS
Research in the Past Year
•Researchers at Western University in
London (Michael Strong lab) discovered
a new pathological marker for ALS called
RGNEF and later discovered that the gene
for RGNEF (ARHGEF28) causes familial
ALS (discovery of new gene causing ALS).
•Researchers at University of Toronto
( Janice Robertson lab) showed that vaccinating ALS mice with an antibody against
abnormal SOD1 can help reduce disease.
•Researchers at University of Montreal
(Pierre Drapeau lab) discovered that the
connection between the neuron and the
muscle is particularly damaged in mutant
TDP-43 zebrafish. Using specific drugs help
to reduce the problem.
•Researchers at Dalhousie University (Victor
Rafuse lab) created a motor neuron model
from induced pluripotent stem cells.
AMYOTROPHIC LATERAL SCLEROSIS
SOCIETY OF BRITISH COLUMBIA
• Researchers at University of Montreal (Alex
Parker lab) developed worm models of
TDP-43 and FUS forms of ALS to test large
numbers of drugs for preventing disease.
• Researchers at the University of Toronto
(Avi Charkrabartty lab) came one step closer
to understanding how mutations in SOD1
make an abnormal form that causes ALS.
•Researchers at University of British
Columbia (Neil Cashman lab) discovered
the first direct link between mutant SOD1
and mutants of FUS and TDP-43.
• Researchers at Laval University ( Jean-Pierre
Julien lab) created one of the first TDP-43
mouse models to effectively demonstrate
some of the disease effects and performed
several studies with them to learn more
about what the mutant TDP-43 causes.
These projects have received funding from ALS
Canada. 
Spring 2013 1
Travel Tips
Before You Go
Medical Insurance
It is very important to ensure that you have adequate medical
insurance, especially when travelling outside of Canada. Your
diagnosis of ALS may have affected your current insurance
and what you would be eligible for in case of an emergency.
• Check with your existing insurance provider.
• If you are seeking insurance, you will want to ensure that
you are forthcoming about your diagnosis so that a plan may
be customized to include ALS and possible issues that could
arise. There are a number of companies that will provide
customized insurance plans, for example Ingle Insurance.
They are more costly but could provide peace of mind.
• Your BC MSP will provide assistance within Canada, however be aware that should you need to see a physician or visit
a hospital an Out-of-Province fee will be charged to you.
Booking your Flight
When booking your flight, you will want to make it known if
you have a disability and may require assistance. Many airlines
have the ability to do this while booking online. You may also
want to explore if you qualify for the One Fare Policy (see
below) prior to booking your flight.
One Fare Policy
In 2008, the Canadian Transport Agency ruled that Air
Canada, Air Canada Jazz and WestJet airlines (when flying
domestically) must not charge more than one fare for people
with disabilities who require an attendant for personal care
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or safety in flight.
What does this mean?
The one fare policy means that a person who requires assistance while in flight and flying between two Canadian airports
on the above airlines is able to fly with an attendant who
would not be charged a fare other than the taxes.
Air Canada, Air Canada Jazz and WestJet have their own
guidelines for eligibility which require a form being completed
by a physician.
For more information about Air Canada’s program:
http://www.aircanada.com/en/travelinfo/before/specialneeds/attendant.html
For more information about WestJet’s program:
http://www.westjet.com/guest/en/travel/special-arrangements/special-needs/one-person.shtml
You must follow the procedure each airline has defined and no
refunds on already purchased flights are available.
ALS Society of BC Transportation Program
The Transportation Support Program provides transportation
for People Living with ALS to attend Society events, appointments at the ALS Centre, other ALS related medical appointments (such as Respirology) and support groups.
Types of assistance provided are; ground transportation for
those requiring wheelchair accessible vehicles, overnight accommodation for patients and a family member when travelling from outside the Lower Mainland to the ALS Centre and
assistance in obtaining flights though Hope Air – a national
charity that assists Canadians in obtaining complimentary
flights if receiving medical treatment outside their region and
cannot afford the cost.
If you require assistance, please contact ALS Society of BC at
1-800-708-3228.
Travelling with Equipment
If you are planning on travelling with a piece of ALS Society
of BC equipment it is important that the following be
observed;
Equipment Insurance
• You must provide the ALS Society of BC with written
proof that the piece of equipment is covered under the
liability of your homeowner policy prior to departing on
your trip.
• Any patient that takes any ALS Society of BC equipment
on a trip without notifying the Director of Patient Services
can be held responsible for any damages to the equipment
incurred while traveling and at their destination.
• Note: All ALS BC equipment is insured for travel within
Canada and the United States)
Equipment Repairs while Travelling
• Upon providing the insurance documents the Director of
Patient Services can provide information to you about what
to do if a repair is needed (contact the Director of Patient
Services for approval) and any other local resources that
they may access (For example: if there is an ALS Society or
Association in that Province or State).
• If your equipment gets damaged in transport by the airline,
you must file a damage report at the time of the incident. Do
not leave the airport without doing this first.
Borrowing Equipment from other ALS Organizations
The ALS Society of BC has a number of connections with
our fellow ALS Organizations throughout North America. If
you are seeking to borrow a piece of equipment while at your
destination, please contact ALS Society of BC to coordinate.
Examples of assistance offered include power wheelchair loan
in Southern California, L/R chair loans in Arizona, Ramps in
South Carolina, Scooter in Florida.
Air Travel Tips
• All airlines will transport a wheelchair (manual and power)
for no charge.
required three hours prior to departure.
• If travelling on an aircraft with a power wheelchair then you
must declare the battery type on their chair at the time of
reservation.
• Certain aircraft have extendable restroom walls that allow
for a caregiver to assist easier (i.e. 747 and larger)
• Certain aircraft have a smaller cargo hold and will require
that the back of your wheelchair be dismantled. The airlines
will assist with the dismantling but may not know how to
correctly reassemble. Know what type of aircraft you will be
flying on in advance. (i.e. DASH 8 and smaller)
• The baggage tag that is affixed to the wheelchair needs to
indicate where you would like it to be held for them once
they reach their destination (ex. at the gate or at Special
Baggage).
• You must make sure that a special transport chair is going to
be on board if they require it during the flight. Indicate this
need at the time of booking.
• Flight attendants are not required to assist you in and out of
the restroom.
• You can request special seating with removable arms and
closest to the bulkhead portion of the plane.
• All prescription medications must be in their original packaging with clear labels or they may be confiscated at security.
• Always check for updated restrictions with the airline prior
to flying.
Travel Extras
If you are looking for information on special activities for people with disabilities at your vacation destination, please contact
ALS Society of BC. There are a number of resources available
that you may be unaware of such as;
• Wheelchair taxis
• Accessible adventures
• Information about beach friendly wheelchair rentals
• Accessible hotels 
• Check in at the airport when travelling in a wheelchair is
These are a compilation of travel tips. Individuals seeking to travel should always consult with their physician to ensure that they are fit to travel.
Spring 2013 3
Wills: Do We Need Them?
BY PATRICK MCGUIRE, CFP, CLU, ChFC
The following is a short story based on true events that happened to clients of mine. It is intended to show the importance
of having a will in place.
Clients John and Sally, age 58 and 56, had two adult daughters,
Marie and Julie. Marie was married to Paul and they had a one
year old baby boy named Danny; they were both employed and
living happy lives as a new family. Julie was single, had fallen on
hard times financially and was living on welfare. One day, John
and Sally called the office to inform us that Marie, Paul and
Danny were involved in a head-on collision with an impaired
driver on the main street of their small community. Both Marie
and Paul were killed instantly, but miraculously, baby Danny
was pulled from the back seat uninjured. Marie and Paul had
never gotten around to completing a will and because of this, as
per BC law, Danny was immediately appointed a public trustee
as his guardian. John and Sally sought legal advice as they
wanted to apply for guardianship of their grandchild. After
discussing options with the lawyer, due to John and Sally’s
age, he advised them to have Julie apply to be Danny’s guardian. As the story of the accident and Danny’s life being spared
made headline news across the province, a couple in a nearby
town who had been trying to adopt for some time heard the
story and applied to become the guardians for Danny as well.
In court, the lawyer asked Julie how she was going to be able
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to support Danny, since she was single and on welfare. At this
point, John jumped up out of frustration and announced that
Marie and Paul had a life insurance policy for $250,000 to go
to Danny and that would help cover any financial burdens.
The judge scolded John for his outburst and explained that
the money was Danny’s and should not be counted on as the
only means to support him. The other couple who had been
seeking custody of Danny had been married for several years
and were financially successful. Due to these circumstances,
with Danny’s well-being in mind, the judge awarded Danny to
the other couple. After being awarded custody of Danny, the
couple also sought to become the trustees of Danny’s death
benefit and were awarded that as well. My clients spent most
of their life savings attempting to have the ruling overturned
to allow them to keep their grandchild, but it was all to no
avail. John and Sally could no longer deal with the losses and
ended up moving away. It was not long after this that John was
diagnosed with cancer and passed away a short time later. If
Marie and Paul had completed a will and named a guardian
and trustee for Danny, perhaps there would have been a happier ending.
Wills are like “Love Notes” telling the people we love that we
care about them. 
The
Cornflower Fund
Planned Giving Program of the ALS Society of BC
Leave a legacy for a world without ALS. Please
remember the ALS Society of BC in your will.
Funds support people living with ALS and research
into the cause of and cure for ALS in BC.
Leaving a Legacy
How to Leave a Legacy
Leaving a legacy to ALS Society of British Columbia
will help others for years to come.
1. Give this information to your lawyer or the person looking after your will.
A gift to the ALS Society of BC is a simple and
powerful way to be remembered. Your gift will
change the future of ALS patients, their families
and friends.
2. Tell your lawyer you want to make a bequest
legacy gift to “Amyotrophic Lateral Sclerosis Society of British Columbia”.
Tax Benefits: A bequest to the ALS Society of BC
is eligible for a gift receipt that can be used for a
tax credit against final income tax payable, both in
the year of death and in the previous year, up to a
limit of 100% of your taxable income.
For more information please contact our office:
ALS Society of BC
1233 – 13351 Commerce Parkway
Richmond, BC V6V 2X7
Tel: 1-800-708-3228 ext. 225
Fax: 604-278-2257
Email: [email protected]
3. E-mail [email protected] or call 1-800-708-3228
ext. 225 about your intention to add the Society to
your will.
4. Sample Statement to add to your will:
“I bequeath to Amyotrophic Lateral Sclerosis
Society of British Columbia of 1233 – 13351 Commerce Parkway, Richmond BC V6V 2X7 % of the
residue (or a specific amount) of my estate for its
own sole and only use absolutely.
Legal Name of the Society: Amyotrophic Lateral
Sclerosis Society of British Columbia
Charitable Registration #: 10670 8985 RR0001
The ALS Society of BC is dedicated to providing direct support to ALS patients, along with their families and caregivers,
to ensure the best quality of life possible while living with ALS. Through assisting research, we are committed to find the
cause of, and cure for Amyotrophic Lateral Sclerosis (ALS). A planned gift to the ALS Society of BC shows both generosity
and foresight. There are few other ways that you can help so many people. We understand the importance of your gift and
will make sure that it is used wisely.
1-800-708-3228
www.alsbc.ca
Spring 2013 5
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2013 Fundraising Events
2013 WALK for ALS - Poster 8.5 x 11 - All Walks Poster_Layout 1 3/26/2013 2:42 PM Page 1
aLs society of
British coLuMBia
april 6th
okeover - Powell river
May 25th
richmond-Vancouver
June 2nd
West kootenay - nelson
June 9th
Mid-island - Parksville
Join thousands of canadians from across canada
for fitness, fun and the fight against aLs
for more information:
Register online www.walkforals.ca
or contact the ALS Society of British Columbia & Yukon
1-800-708-3228 | [email protected]
“ALS is a devastating disease that affects the person living
with ALS, their family and caregivers. There is no known cause
or cure, yet. Your participation will help us to raise funds to
support people living with ALS, and research to find the cure.”
- Wally Buono, GM & Vice President of Football
Operations BC Lions Football Club, Official Spokesperson for the
WALKs for ALS in B.C. & Yukon
Provincial supporters:
June 15th
okanagan - kelowna
Vernon
fraser Valley - abbotsford
surrey
June 16th
tri-cities/ridge Meadows Port coquitlam
June 22nd
agassiz
kamloops
Williams Lake
June 23rd
Prince george
september 7th
Dawson creek
september 15th
Victoria
september 29th
Whitehorse - yukon
Making MoMents Matter
Spring 2013 7
2013 Fundraising Events
5th Annual
ALS Golf Tournament of Hope
Hosted by:
The Dunes at Kamloops Golf Course
Thursday August 22, 2013
Register today to be a part of this year’s Golf Tournament of Hope to raise
funds for ALS patient services and the Kamloops Endowed Fund, providing
improved communication technology for people living with ALS.
Registration is at 10:30AM
Shotgun Start is at 12:00PM
Space is limited.
To register or for sponsor information:
1.800.708.3228 ext. 231or
[email protected]
Golfer Registration includes:
•
•
•
•
•
•
Mimosa welcome
Lunch
Dinner
Post tournament reception
Live and silent auctions
18 holes, cart and practice
balls
• Each golfer will receive a golf
shoe bag
• Participation in the popular
wall of wine
Jim Choppen,
Tournament Chairperson
[email protected]
250.377.7727
The Dunes at Kamloops Golf Course
652 Dunes Drive Kamloops, BC V2B 8M8
250.579.3300
Charitable# 106708985 RR0001
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Kamloops Golf Poster.indd 1
4/5/2013 9:33:16 AM
Spring 2013 9
2013 Fundraising Events
Join us in this year’s
8th Annual PGA of BC
GOLFATHON
for ALS
Help support your local golf pros to
raise awareness and funds for the ALS
Society of BC.
During the month of June, golf pros will
golf from sunrise to sunset to support
those living with ALS.
“Courage is getting up in the morning every day to face a battle
you know you can’t win.”
-
John Feinstein, author of Caddy for Life, on Bruce Edwards
Please Donate at: www.golfathonforals.ca
ALS Society of BC & Yukon 1.800.708.3228
Charitable# 106708985 RR0001
Proud Supporters
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S p r i n g 2 0 1 3 11
2013 Fundraising Events
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The Blue
Cornflower
was
chosen to sy
mbolize
ALS, as it is
hardy desp
ite its
fragile appe
arance. It is
also
long lasting,
and grows
in most
locations in
Canada. As
the
Blue Cornfl
ower is plan
ted,
awareness
of ALS grow
s
along with
it across th
e
country.
F L OW E R DAY S
Make a donation and receive a cornflower.
Help raise awareness of ALS.
Richmond
Saturday & Sunday, May 4th & 5th
Tri Cities – Ridge Meadows
Saturday, May 11th
Location: Landsdowne Mall
Locations: various
Contact: Sussana Garrido
Contact: Christine Hilliard
Email: [email protected]
Email: [email protected]
Victoria Area,
Sidney & Salt Spring Island
Surrey
Saturday, June 8th
Saturday June 1st
Locations: various
Locations: Scottsdale Centre and
Morgan’s Crossing
Contact: Lynne Murray
Phone: 250 920 7876
Contact: Amy Graham
Email: [email protected]
Since its inception 27 years ago, the
Victoria Flower Day Committee has raised
over $520,000 for ALS research.
Show your support of the Peoples Drug Mart
Walk for ALS – Surrey.
S p r i n g 2 0 1 3 13
Events Around the Province
 Shelly Stanhope and Brooke Clarke from Handsworth
Secondary raise $5,230 at their Cookbook Fundraiser
 Paul Wilkinson, partner at KPMG, presents Wendy Toyer with
$10,000 in support of the equipment loan program. KPMG has
also committed another $10,000 in 2014
 Walk for ALS coordinators at the Volunteer Conference
 Phi Delta Theta Tetter Totter-A-Thon for ALS
 TEAM ALS BC and Yukon receive $40,000 from Ed Sue Peoples Drug Mart Peoples Pharmacy as sponsor of the Walks for ALS in BC
and Yukon
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Support Groups
The support groups provide an open, friendly and safe environment for ALS patients, family members,
friends and caregivers to discuss issues related to living with ALS. Experienced 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.
Kelowna “Living with ALS Group”
Dates: last Friday of each month
Time: 1 – 3pm
Location:
Contact: Email:
Interior Health Authority’s Capri Health Unit
Office in the Capri Shopping Centre at the corner of Gordon & Hwy 97. Use the mall entrance
next to the KVR coffee shop. The IHA reception
area is at end of hallway to the right. You’ll be
directed our way! Wheelchair accessible.
Louise Adderley
[email protected]
Surrey
Date: Time: Location: Contact: Phone: Vancouver Area
Dates: 12:30 – 2:30pm
abc Country Restaurant
202 – 15373 Fraser Hwy, Surrey
Shirley Cook
604.584.3098
10:30am – 12:00pm
Time: Location: Contact: Phone: GF Strong Rehab Centre, Room 160D, 4255 Laurel Street, Vancouver
Lisa Hercus, Director of Patient Services
604.278.2257 ext. 226
North Central Island
Wednesday, May 29th
Date: Time:
third Wednesday of each month last Thursday of each month (except July and August)
1­ – 3pm
Location: Contact: Phone: Email:
Brechin United Church, 1998 Estevan Road, Nanaimo
Heather Bemister, Support Services Coordinator
604.278.2257 ext. 231 [email protected]
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:
Lisa Hercus, Director of Patient Services
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. 
S p r i n g 2 0 1 3 15
ALS Society of BC: Awards Ceremony
Volunteers Recognized
ROY SLATER VOLUNTEER AWARD The purpose of this award is to recognize exemplary volunteer leadership. It is awarded for an outstanding contribution to
the advancement of the mission and goals of the ALS Society of BC. The award honours Roy Slater, a dedicated volunteer
who died from ALS in 1993, and is given to an individual who epitomizes volunteerism through selfless contribution to the
ALS Society and those it serves.
Don and Glenda Reynolds, President and Secretary for the North Central Island Chapter of ALS BC
Since 2009, these two have kept the North Central Island Chapter of ALS BC going. They
represent ALS BC from Mill Bay to Holberg on Vancouver Island and the Powell River area. They
volunteer to promote the Society and to increase awareness about ALS. They attend; numerous 3rd
party fundraisers in this area, connect with patients and families living with ALS, support group
meetings, Mid Island Walk for ALS and any other function that supports the mission of ALS BC.
They maintain a storage of ALS BC promotional and informational materials. As the president of
(left to right) Phil Dubois, Glenda the chapter, Glenda sits on the ALS BC board of directors.
and Don Reynolds, Donna Bartel
HONOURARY LIFE MEMBER An extraordinary volunteer contributing to the support the ALS Community in BC & Yukon for a period of not less than five
years. Up to three may be named in any given year.
Ellen Mahoney
27 year continuous volunteer service as the patient services coordinator for the Victoria Chapter of
ALS BC and is the current chapter president. Ellen leads the chapter monthly support group, has
organized the last two Flower Day events in the Victoria area, is a member of the Patient Services
committee and supports the Victoria Walk for ALS.
(left to right) Phil Dubois, Ellen
Mahoney, Donna Bartel
LEADERSHIP DEVELOPMENT AWARD The purpose of this award is to recognize outstanding leadership development of a new ALS program or service initiated
and implemented by an individual or chapter.
ALS Centre Team
(left to right) Phil Dubois, The
ALS Centre Team, Donna Bartel
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Since the first Mobile Clinic was held in 2008, the staff of the ALS Centre Team has taken the
initiative to host four to five clinics each year throughout BC. In the Fall of 2012, a new location
was added in Chilliwack. The team supports the psychological support program of the Society and
presented at the annual conference to the psychologists and clinical counsellors who are part of
this program. As well, two members of the team volunteered to attend Camp Alohi Lani
(Bridgette and Amy) which is four days. As well the team supports the annual caregiver days.
of the als society of bc
EXCEPTIONAL PUBLIC AWARENESS PROGRAM AWARD The purpose of this award is to evaluate and recognize exceptional programs that aimed to educate and increase public
awareness of ALS during the previous 12 months. Public awareness activities may include liaisons with the media, co-ordinating public awareness displays and speaking to the public or other organizations about ALS. There are four categories of
eligibility given in each sub-set.
Steve Darling (individual)
Steve came forward in 2012 to offer his support to the PGA of BC Golfathon for ALS as the official
ambassador. He appeared in the Global TV ad and promoted the Golfathons that were taking place each
week during the month of June – ALS Awareness month. He also provided an interview to the PGA of BC
and Don McCusker, and interviewed Jamie Stevenson from the Kelowna Golf Club who golfed 474 holes in
24 hours. Revenues raised in 2012 were up 40% compared to the previous year.
Steve Darling
TEAM 1040/1410 Radio (media)
The Team provides promotion for the ALS Memorial Golf Tournament valued at over $18,600 on
air, and on line. For the PGA of BC Golfathon for ALS, the Team provides over $36,600 in on-air
ads for an reduced rate of $5,000. The ALS Society of BC appreciates Team 1040/1410 Sports
Radio for the value of over $ 50,000 of advertising. Michael Egan from Team accepted the award
on behalf of his team.
(left to right) Phil Dubois,
Michael Egan, Donna Bartel
Kent Simmonds, Raffelina Sirianni and the crew from CFJCTV 7 – Kamloops (a group of two or more people)
For the production and distribution of a feature titled “The Power of Hope.”
Producer and Cameraman Kent Simmonds and news reporter Raffelina Sirianni produced this
thirty minute feature, raising awareness of ALS.
Simmonds accepted the award and stated, “we will continue to support the ALS Society.” He has
lost a dear friend to the disease and hopes to raise awareness and funds for the cause.
(left to right) Phil Dubois, Kent
Simmonds, Donna Bartel
PGA of BC (corporate partners/sponsors)
Recognizing eight years of support through the PGA of BC Golfathon for ALS and the numerous news articles that result in local papers on on-air on local radio & TV stations throughout BC.
“The PGA of BC is extremely proud of the history of this event, as well as our continued support of
the ALS Society of BC” says Donald Miyazaki, Executive Director of the PGA of BC. “Over the
course of the past seven years, it’s great to see our membership embrace the event and continually
go above and beyond, year after year. The figures are astonishing and we look forward to continu(left to right) Phil Dubois, Donald ing our relationship with the ALS Society of BC in fighting this deadly disease” Miyazaki adds.
Miyazaki, Donna Bartel
S p r i n g 2 0 1 3 17
WALK FOR ALS AWARD The purpose of this award is to recognize an outstanding WALK for ALS.
The award recognizes and celebrates outstanding contributions and achievement in developing the Walk to its fullest
potential by any or a combination of:
• bringing new or innovative additions to the Walk program
• building local community awareness of the Walk and of ALS generally
• achieving extraordinary fundraising results over a period of a year
Peoples Drug Mart Victoria Walk for ALS
It is with great pleasure that the ALS Society of BC announces Razool Rayani and Adele Fraser as
the recipients of the Walk for ALS Award. Their efforts increased participation which in turn
resulted in an increase of 100% in revenues for the 2012 Walk. Rayani and Fraser were successful at
building local community awareness of the Walk and to the disease itself. Rayani accepted the
award on their behalf.
(left to right) Phil Dubois, Razool
Rayani, Donna Bartel
“It has been a pleasure working with the ALS Society,” says Rayani who helped take over the
coordination of the Peoples Drug Mart Victoria Walk in 2012. Rayani and Fraser engaged local
businesses, media as well as cultural groups to take part in the Walk.
“It is a deep honour to accept this award,” says Rayani. “Adele and I make a fantastic team,” he adds.
EXCEPTIONAL FUNDRAISING PROGRAM AWARD (3RD PARTY EVENT) The purpose of this award is to evaluate and recognize excellence in fundraising programs implemented during the previous 12 months. This award recognizes an individual or project team who has demonstrated excellence in fundraising. An
exceptional program develops an innovative idea and attains or exceeds a fundraising goal. This can be a new or continuing
program. There are two awards.
Don McCusker (individual)
Don raised over $32,000 as a participant in the Vancouver Golf Club – PGA of BC Golfathon for
ALS. He did this by sending over 1,500 emails to his family, friends and contacts. This was the
largest amount raised in a 3rd party event by an individual in 2012.
Don McCusker, who was diagnosed with ALS in January 2012, got involved with the ALS Society
and has been supporting it since. Don’s brother, Steve McCusker, accepted the award on his behalf.
(left to right) Phil Dubois, Steve
McCusker, Donna Bartel
Abbotsford Police Department Annual John Goyer Memorial Golf Tournament (a group of two or more people)
For the past nine years, Sergeant Rick Stewart and his committee have coordinated a golf tournament in memory of fallen comrade, Constable John Goyer, with all proceeds donated to ALS BC.
Each year approximately $10,000 has been raised. They have raised over $90, 000 to date in hopes
of finding a cure for the disease.
(left to right) Phil Dubois,
Sergeant Rick Stewart, Detective
Jodi Christie, Donna Bartel
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“We want to help find a cure for ALS” says Stewart “we will continue holding our golf tournament
each year” he adds.
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EXCEPTIONAL ADVOCACY AWARD The purpose of this award is to recognize an exceptional advocacy initiative that sought to improve quality of life for a person or persons with ALS during the previous 12 months. This award recognizes the following:
• individual advocacy on behalf of a person affected by ALS
• an initiative that changes public policy to the benefit of people affected by ALS There are two awards.
Gaby Merner (individual)
Gaby travelled with the BC Delegation to Ottawa to participate in Hill Day at Parliament. She reported on the efforts from the
group to ALS BC. She is the past chairperson of the ALS BC Patient Services Committee and initiated the discussion to provide
ongoing support to past caregivers. When she was caring for her husband Lyle while living with ALS, she was interviewed on 2
Global TV News stories which she has provided permission to ALS BC to use as needed. She is an active member of the Peoples
Drug Mart Richmond-Vancouver Walk for ALS and has been since the inception.
ALS Adventure Challenge/Nilsson Foundation (a group of two or more people)
NILSSON FOUNDATION
ON FOUNDATION
Lisa and Dave Richardson and their team raised funds and awareness for ALS by
hosting a number of ALS Adventure Challenge Races. The funds raised are held on
account to support improved research technology and services for ALS Patients that will
improve their quality of life and new initiatives proposed by the ALS Society of BC. In
2012 funds were provide for the BC delegation to attend Hill Day in Ottawa and the Psychological Support program workshops.
LEADER OF TOMORROW AWARD The Leader of Tomorrow Award recognizes youth and young adults under the age of 25 whom individually or as part of
a group is making a difference in the lives of those living with ALS through their volunteer efforts. This award recognizes
initiatives or efforts undertaken in the previous calendar year in support of ALS including fundraising, advocacy, public
awareness, or going above and beyond to care for an individual living with ALS by providing assistance, companionship and
support. There are (up to) three awards.
Sam Dean-McCuaig (age 5 – 13)
In honour of his Gramma’s (Margret Perry) 70th birthday and in memory of his grandfather who
passed away from ALS, nine year old Sam held a 50/50 draw at the birthday party and raised $750.
When asked why he wanted to hold a fundraiser he said “I wanted to hold a fundraiser for people who
can’t live a healthy long life”.
(left to right) Phil Dubois, Sam
Dean-McCuaig, Donna Bartel
Lauren Braun (age 18 – 25)
Lauren has been a TEAM ALS BC & Yukon volunteer since 2005. She volunteers at most
Victoria Chapter of ALS BC events including Flower Day, Walk for ALS, and others. She hosted
a Burger and Beer night at her university and raised $1,277 for ALS.
“One of the most inspiring things about the ALS Society is their volunteers,” says Braun as she accepted
her award.
(left to right) Phil Dubois,Lauren
Braun, Donna Bartel
S p r i n g 2 0 1 3 19
Chapters: Victoria
Victoria Chapter Events & News
Donation to the ALS Society of BC
Pennies for ALS
President Ellen Mahoney and Peoples Drug Mart Rasool Rayani
Avery Donaldson with her pink “piggy bank” with 1,400 pennies
in honour her Grandpa Wright with ALS who lives in Toronto
Flower Day
Victoria Support Group
Saturday, June 1st
Meetings: 3rd Sunday of each month
Coordinator
Lynne Murray Tel: 250-920-7876
Location
Victoria Health Clinic Multi Purpose Room
1945 Cook Street (corner of Cook &
Pembroke), Victoria, BC
Charitable Reg #: 10670 8985 RR0001
Lyall Street Car Wash, Car Show
& BBQ Fundraiser Event
Saturday, July 20th 10am – 3pm
Location
Lyall Street Service Station
1480 Lyall Street, Esquimalt, BC
For more information
Ellen Mahoney
Tel: 250-479-4266
Email: [email protected]
Ellen Mahoney
President
250.479.4266
[email protected]
Rasool Rayani
Vice President
778.885.2111
[email protected]
Merle Stewardson
Treasurer
250.598.4172
[email protected]
All proceeds to ALSBC
VICTORIA WALK FOR ALS
Sunday, September 15th, 2013
University of Victoria, Parking Lot 6
Registration: 12:00 pm Walk starts at: 1:00 pm
For more information contact the
Victoria Walk for ALS Coordinators:
Rasool Rayani — 778-885-2111
Adele Fraser — 250-418-0866
[email protected]
Walk with us to stop ALS in its tracks.
Join thousands of Canadians across the country for a day of fitness & fun for a great cause.
Proceeds go toward funding research and providing support services for those living with ALS.
Register Today | www.alsbc.ca
20 N e w s l i n k
Victoria Chapter Contacts
of the als society of bc
Joan Axford
Secretary
250-474-1018
[email protected]
Ellen Mahoney
Client Services Co-ordinator
250.479.4266
[email protected]
Lynne Murray
Flower Day Coordinator
250.920.7876
[email protected]
ALS Walk Coordinators
[email protected]
George Stewardson
Immediate Past President
Victoria Chapter Events & News
Model Ships
Pennies for ALS
Dave Denton’s model ships
Naeema (3), daddy Rasool, and Aniqa (6) Rayani counting
pennies for ALS
Sweetheart’s Tea
Goodies provided at the Sweetheart’s Tea
Sweetheart’s Tea
Victoria Chapter Sweetheart’s Tea for former caregivers
S p r i n g 2 0 1 3 21
Chapters: North Central Island
North Central Island Chapter Events & News
North Central Island Support Group
Support Group Meeting
Next Meeting: Wednesday, May 29 1–3pm
Dr. Neil Cashman and President Glenda Reynolds at Support
Group Meeting
th
Location: Brechin United Church
1998 Estevan Road, Nanaimo BC
For more information:
Heather Bemister
Email: [email protected]
Royal Canadian Legion
Jean Allen, office manager and Darwin, president Legion #256
with Don and Glenda Reynolds, North Central Island Chapter in
centre.
North Central Island
Chapter Contacts
MID ISLAND WALK FOR ALS
Sunday, June 9th, 2013
City Hall Square, Parksville, BC
Registration: 11:00 am Walk starts at: 12:00 pm
For more information contact the
Mid Island Walk for ALS Coordinator:
Jennifer Eaton — 250-893-3100
[email protected]
Walk with us to stop ALS in its tracks.
Join thousands of Canadians across the country for a day of fitness & fun for a great cause.
Proceeds go toward funding research and providing support services for those living with ALS.
Register Today | www.alsbc.ca
22 N e w s l i n k
of the als society of bc
Glenda Reynolds
President
250.244.3791
[email protected]
Don Reynolds
Secretary
250.244.3791
[email protected]
Sheldon Cleaves
Member at Large
250.748.8072
[email protected]
Overview of ALS Society of BC Patient
Services Programs
EQUIPMENT LOAN PROGRAM
With 2,200 pieces of medical equipment our
Equipment Loan Program is designed to help people
cope with the daily challenges of decreasing mobility and independence, through obtaining basic and
essential assistive equipment. This includes mobility
equipment, lift equipment, beds & accessories, communication devices, and bathroom aids, if needed.
All equipment loaned is available at no charge to
registered members and must be prescribed by a
Healthcare Professional such as an Occupational
Therapist, Speech Language Pathologist or
Physiotherapist. Delivery and setup of equipment is
also provided.
TRANSPORTATION SUPPORT PROGRAM
The Transportation Support Program provides transportation for People Living with ALS to attend
Society events, appointments at the ALS Centre,
other ALS related medical appointments (such as
Respirology) and support groups. Types of assistance provided are; ground transportation for those
requiring wheelchair accessible vehicles, overnight
accommodation for patients and a family member
when travelling from outside the Lower Mainland
to the ALS Centre and assistance in obtaining flights
through Hope Air – a national charity that assists
Canadians in obtaining complimentary flights if
receiving medical treatment outside their region and
cannot afford the cost.
SUPPORT GROUPS
Support groups provide an open, friendly and safe
environment for ALS patients, family members,
caregivers and friends to discuss issues related to
living with ALS. Groups are facilitated by experienced volunteers.
PSYCHOLOGICAL TREATMENT SERVICES
Psychological treatment services are available probono at locations across BC. Registered Psychologists
and Clinical Counsellors provide much needed
therapy and counselling to ALS Patients, their families and caregivers at any stage of the illness. These
healthcare professionals have received information
about ALS and are donating their services. Patients
can go alone or with other loved ones; treatment is
tailored to meet your needs.
CAREGIVERS DAYS
Held every Fall in communities around BC,
Caregivers Day is a chance for the full-time primary
caregivers of ALS Patients to have a day of respite.
This event allows for people who devote themselves
to the care of their loved ones to come together
and share experiences. It also provides the opportunity to learn how to take better care of themselves
and how to cope with grief. When ALS hits a family,
the focus turns to provision of care, equipment, and
emotional support to the Person Living with ALS.
The impact on the family is powerful. Caregivers put
their lives on hold while they are dealing with their
spouse or loved one’s journey through this disease.
This is why we strive to make Caregiver’s Days special for our attendees by providing a comfortable,
supportive environment. This program is made possible by the support of the George ‘Sonny’ Williams
Endowment Fund.
S p r i n g 2 0 1 3 23
CAMP ALOHI LANI
In July ALS BC is proud to host a camp for youth who have a Parent
(or Grandparent in a significant role) Living with ALS. ALS BC is
extremely pleased to be able to offer this weekend retreat at no
cost to families. Those living outside the Lower Mainland will also be
given the opportunity to travel at no cost (with chaperone if required)
to attend this very special weekend.
Camp Alohi Lani, which means ‘Bright Sky’ in Hawaiian, is a safe setting in which youth aged 8 –17 years can come together and receive
support for their own journey. From the Heahea (welcome) ceremony
on Thursday night to the Hopena (farewell) on Sunday afternoon
ALS BC is offering a respite where kids can be kids. Most importantly
Camp Alohi Lani offers campers an opportunity to meet other youth
from across BC and make connections with peers.
Amyotrophic Lateral
Sclerosis Society
of British Columbia
1233 – 13351 Commerce Parkway
Richmond BC V6V 2X7
t 604.278.2257 f604.278.4257
tf 1.800.708.3228 www.alsbc.ca
Wendy Toyer
Executive Director
E [email protected]
X 222
Rena Mendoza
CARE CONNECTIONS
The primary purpose of forming a Care Connection is to reduce caregiver responsibilities and reduce the worry the person with ALS has
about their caregiver. By caring for the caregiver, the person with
ALS is helped as well. The ALS Society of BC’s Care Connection is a
program to aid your own group of caring family and friends to help
their loved ones with ALS and their caregivers.
Tasks that families need help with may include, walking the dog,
cooking a meal, providing companionship or transportation and
other daily caregiver activities. By using a specially customized online
web tool that has been developed through a partnership between
ALS Society of BC and Lotsa Helping Hands – staying in touch and
letting family and friends know what you may be needing is easier.
MOBILE CLINICS
In partnership with Vancouver Coastal Health and the ALS Centre
at GF Strong Rehab Centre, the ALS Society of BC provides Mobile
Clinics to outlying communities. Past locations have included
Nanaimo, Victoria, Kelowna and Prince George. ALS Centre healthcare professionals including a Neurologist and team members such
as Registered Nurse, Speech-Language Pathologist, Social Worker,
Registered Dietitian, Occupational Therapist, Physiotherapist and an
ALS Society of BC representative travel to clinic locations to provide
follow-up appointments. 
Thank You to our Provincial Partner
24 N e w s l i n k
of the als society of bc
Manager of Finance
& Donor Relations
E [email protected]
X 225
Lisa Hercus
Director of Patient Services
E [email protected]
X 226
Susan Hampton
Volunteer Program Coordinator
E [email protected]
X 229
Heather Bemister
Support Services Coordinator
E [email protected]
X 227
Billie Doyle
Equipment Loan Program
E [email protected]
X 223
Christine Liao
Administration Assistant
E [email protected]
X 227
The ALS Society of BC is
dedicated to providing direct
support to ALS patients,
along with their families and
caregivers, to ensure the best
quality of life possible while
living with ALS.
Through assisting research, we
are committed to find the cause
of, and cure for Amyotrophic
Lateral Sclerosis (ALS ).