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KNOWLEDGE CONFIDENCE LIFE!
Victoria Epilepsy &Parkinson’s CentreAnnual Report 2009/2010
2
Mission Statement
Director’s Message
President’s Message
Knowledge (What is Epilepsy/Parkinson’s?)
Confidence (What is the VEPC?)
Life (Stories from our Members)
The Financial Picture
Donors
34568
101415
Contents:
Meet Our Staff:2009/2010
Catriona JohnsonExecutive Director
Maureen MatthewParkinson’s Program Coordinator
Isa MilmanEpilepsy Program Coordinator
Lissa ZalaEducation Services Coordinator
Della TruittOffice Manager
Adam HolroydCommunications Assistant
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Our Mission:We are a vibrant and welcoming non-profit society whose purpose is to strengthen clients’ and families’ ability to manage the physical, psychological and social effects of Parkinson’s and epilepsy.
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President’s Message:
Staying in Touch
In putting this report together, I came to the conclusion that there are a number of themes that, when combined, make up the fabric of VEPC and create an environment that makes one enthusiastic about the organization. They are:
Events•
Surprises•
Improvements•
The people•
The future•
The challenges•
The opportunities•
The events that take place throughout the year are those that bring us together, be they programs created by VEPC that bring the membership together or fund raising events designed to expand awareness and bring together supporters and donors.
This last year there was a wonderful surprise from Mr. Charlie Borden of V.I. Propane who walked into the office with a donation that filled the gap left by the withdrawal of funding from the Vancouver Island Health Authority.
Then there are the improvements that take place to address the infrastructure of the organization and to better respond to the external environment. For example, this year we have made improvements to VEPC’s data collection system as well as to its accounting systems, allowing us to better track our progress and to better manage the monies that flow through the organization.
Then there is the most important part of this organization—the people—without whom we would be unable to operate—the staff who show such dedication to the work at hand, the donors without whom VEPC would not survive and the volunteers who tirelessly help out in every conceivable way.
The future is always a challenge. As an organization, in order to remain viable, we have to explore different options so we may provide the kinds of services that will improve the quality of life of our clients. It is always a challenge to ascertain what programs and educational events will address our members’ needs, to maintain the meaningful services that currently exist, and to find funding to ensure that new ideas can be turned into successful projects and programs.
The opportunities that exist to make our organization a vibrant one are many and only limited by the imaginations of the people associated with VEPC, be they clients, donors, staff or volunteers.
With the co-operation of everybody involved with VEPC, I am confident that we can provide a set of services that are second to none… so let’s stay in touch.
—Michael Doman, President
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The individuals featured in our annual report
for fiscal year 2009/10 contribute to the betterment of
the people and organizations of the Victoria CRD. They
are connected to the community where they make
their homes, savour civic opportunities, and cherish
the company of loved ones. The two stories we have
included in this report—one about a current member
and one that profiles a couple’s legacy—highlight the
diversity of interests and commonality of passion
that are typically exhibited by the persons whom
the Victoria Epilepsy and Parkinson’s Centre (VEPC)
support. These people display all the components
of lives that are connected and interconnected, lives
whose quality may have been challenged but who
seek ways to help themselves and others.
Connections are key to the work of VEPC.
Whether a resource listed in the newsletter, a support
group or an educational event, VEPC offers a welcoming
place where people can come together to share. We
know from research that those with epilepsy and
Parkinson’s are at greater risk of depression and
isolation. We know too that having people to connect
with, laugh with, and cry with, is healthy. Helping a
person get connected to the community is beneficial
to the individual and to the community.
We are fortunate that you are connected to us.
This year our members have shown incredible support
for VEPC. You have served on advisory committees,
volunteered at events, provided ideas, filled out
surveys, participated in planning, stuffed envelopes,
walked for Parkinson’s and hopped for epilepsy. You
have done this during challenging times and despite
personal hardships.
The 2009/10 fiscal year has been an eventful
one. Our conference on epilepsy—Reason to Hope:
Brain Research In Action—was a resounding success.
We provided more educational workshops for people
with Parkinson’s than ever before. We continued to
provide top-notch services in our Tools for Success
Tutoring and Cognitive Behavioural Therapy programs
for individuals with epilepsy and in our exercise
programs and Self-Management and Newcomer
groups for those with Parkinson’s. We raised public
awareness about epilepsy and Parkinson’s and
formed new partnerships with other local groups.
Organizationally in 2009/10, we revamped our
accounting system, began work on a new website,
undertook strategic planning, and established new
development goals. We struggled as we considered
the value of relationships with national organizations
and with news of impending funding cuts.
All of VEPC’s successes, and its resilience when
faced with problems, were due to connections—the
connections between members, volunteers and donors
that define community. On behalf of VEPC, I sincerely
thank you for the role you play.
—Catriona Johnson, Executive Director
Director’s Message:
Community Connections
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KnowledgeKnowledgeEpilepsy is the most common serious
neurological condition in the world,
affecting approximately 1% of the
population. Why the normal electrical
activity in the brain suddenly changes
and produces seizures is still a mystery
that medical science is working hard to
solve. In about 40% of cases, seizures are
linked to stroke, tumours, head trauma,
or fetal development. After childhood,
the greatest incidence of epilepsy occurs
in the elderly. The extent of the impact
on a person varies greatly.
What is Epilepsy?Storms of the Mind
7
KnowledgeKnowledgeParkinson’s is a progressive neurological disorder resulting from the loss of dopamine in a part of the brain called the substantia nigra. Dopamine acts as a chemical messenger, allowing nerve impulses to travel smoothly from one nerve cell to another. This enables the transmission of messages to muscles of
the body to begin voluntary movement. This lack of Dopamine can cause tremors, rigidity, akinesia (the loss of spontaneous movement) and problems with posture. Although Parkinson’s most often affects the elderly, this is not always the case; Michael J Fox is a famous example of a younger man with Parkinson’s. Unfortunately there is no known cure; however treatments to alleviate symptoms have been developed.
What is Parkinson’s?Communications Breakdown
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ConfidenceConfidenceThe Victoria Epilepsy and Parkinson’s
Centre (VEPC) is a dynamic, welcoming
non-profit society whose purpose is to
provide support and education to those
suffering from Parkinson’s and Epilepsy,
and their families. The VEPC offers a
multitude of services, from individual
consultations and counselling, to group
therapy, exercise sessions and tutoring.
VEPC staff and volunteers also visit
schools and run events to raise awareness
and promote public education regarding
the two conditions. Parkinson’s and
Epilepsy are not related, but combining
administrative resources allows VEPC
to provide much more cost-effective
services to the communities of Greater
Victoria, the Saanich Peninsula and the
Gulf Islands.
The VEPCOur Mission:
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ConfidenceConfidenceIn 2009/10, the Victoria Epilepsy and
Parkinson’s Centre provided:
Over 1200 personal consultations in •
person, by telephone and through
e-mail with individuals, families and
health and education professionals
6,225 newsletters to over 1500 •
individuals, families and professionals
102 bi-weekly exercise sessions •
specifically designed for people with
Parkinson’s
Training and awareness about •
epilepsy or Parkinson’s to over 1300
students, educators, health care
providers, first responders and others
25 educational workshops on •
Parkinson’s attended by 626
participants
Two world-class conferences on •
epilepsy in November 2009 and one
on Parkinson’s in April 2010
32 tutoring classes for children with •
epilepsy and 17 cognitive behavioural
therapy sessions for adults with
epilepsy
And much more•
The VEPCThe Results
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LifeLifeElizabeth “Lizzie” Chambers was a vibrant
woman loved by her husband, David.
Together, they were passionate about life
and wellness. Together they reveled in the
beauty of the BC Coast and in their time
with one another.
Late in life, Elizabeth was diagnosed
with Parkinson’s disease (PD) which brought
Elizabeth and David to the Victoria Epilepsy
and Parkinson’s Centre. There they met
with Maureen Matthew, the organization’s
Parkinson’s Program Coordinator, who
counseled them on strategies to help
Elizabeth maintain her health as long as
possible and connected the two of them with
resources in the community. In addition to
husbund, David would become Elizabeth’s
care partner, beginning a journey that
neither had expected to take. Despite the
challenges posed by Parkinson’s, Elizabeth
and David remained determined to live life
to the fullest.
Research tells us that a key to
maintaining health and well-being in
people with Parkinson’s is through exercise.
While exercise cannot cure Parkinson’s
or bring back levels of dopamine, it can
help to preserve the ability to use muscles
effectively. Not only does exercise aid
balance and strength, it reduces depression
and anxiety and improves cognition. For
most with Parkinson’s, the wide array
of exercise programs and opportunities
throughout Victoria – yoga, Tai Chi, water
fit classes, dance – make it easy to find
exercise programs that meet their needs.
As Parkinson’s symptoms progress however,
10 Years LaterA Gift to Those With Parkinson’s
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LifeLifespecialized classes may become more
suitable, offering safety, camaraderie and a
place where no one bats an eye at tremors
or unusual movements. In the latter years of
her life, Elizabeth was a weekly participant
in VEPC’s specialized seated exercise class
for people with Parkinson’s. There she not
only benefitted physically from the exercise,
she also found a group of people with whom
she shared laughter, stories of family and
friends, and hope for the future.
When Elizabeth passed away it was
a tremendous loss to all who knew her
and, seeking a way to memorialize his wife,
David approached the Victoria Epilepsy and
Parkinson’s Centre. As a result, in 2000
the Elizabeth Jean Chambers Memorial
Endowment Fund was formed to support
the exercise program that she so loved.
A gift of $100,000 was invested and the
proceeds used to permanently increase
the staffing levels in the exercise program.
Ten years later, the gift that Elizabeth and
David gave to the Victoria Epilepsy and
Parkinson’s Centre is an enduring one that
will help people living with Parkinson’s into
the foreseeable future. This last year, the
organization offered seated exercise classes
twice per week throughout the year, and
with the support of the United Way, began
a new exercise program for individuals who
are safely able to participate in standing
exercises. Interest on endowment fund
investments continues to fund exercise
assistants and a transportation coordinator.
In the exercise classes people with
Parkinson’s are moving, sharing, laughing...
thanks to a couple determined to live well
and give back.
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Marilyn Wilkins is a soft-spoken and
generous woman whose bright eyes hide
a steely determination and a thirst for
knowledge. She vividly remembers her
introduction to epilepsy—her daughter’s
first seizure.
“When she was 15 months old, she
was with no health problems whatsoever,
and we were down in Disneyland and
she had, I thought, a fit. I didn’t know
what it was. I phoned the hotel office and
within minutes there were 8 paramedics,
including police and firemen and the
whole works in our room. We were sent
to the hospital where they said they could
not diagnose the cause, but that it was a
febrile seizure,” recalls Wilkins. “... That
means that the temperature spikes and
the body says ‘Ah ha! I’m going to fix this’
and goes into a seizure, just like a furnace
would do. That was her first seizure, she
had three more and of course we had
never seen anything like that.”
Marilyn’s young daughter was
placed on Phenobarbitol, the practice at
Quiet DeterminationA Mother’s Journey
13
the time. The medication was gradually
reduced and after age 6 the seizures
seemed to stop. Their doctor never
mentioned the term “epilepsy.”
Says Marilyn: “We never had that in
our minds. Then she grew up, graduated
from high school, good marks, beautiful
child. All three of our kids are good
students and have
done well in life.
Then when she
was going around
with her husband
to be, they were at
Bolen Books and
she had a seizure
there. That was
her first adult seizure.”
That was when Marilyn contacted
the Victoria Epilepsy and Parkinson’s
Centre. She met with VEPC’s Epilepsy
Program Coordinator Isa Milman, became
an avid reader of The Brainwave and more
recently the monthly e-newsletter, and
she is now a member of VEPC’s Epilepsy
Advisory Committee.
“I’ve read myself silly ever since
about everything,” says Wilkins. “Our
daughter got her Bachelor of Education…
and she is teaching special needs
children... She’s been one of the fortunate
ones where it’s not a daily thing.”
Marilyn’s knowledge and caring
nature has made her an asset to VEPC
and the community. In March 2010, she
participated in a meeting with Minister
of Health Kevin Falcon regarding epilepsy
and was in the Legislature as the official
Provincial Proclamation marking March
26th as Purple
Day for Epilepsy
was read in the
chamber.
“ T h a t ’ s
what I’m about;
I’m not afraid to
tell people. It’s
not going to be
hidden in my house,” states Wilkins, her
determination beginning to be revealed.
“I want people to know – don’t be afraid;
there are agencies and doctors to help.”
“...the temperature spikes and the body says ‘Ah ha! I’m going to fix this’ and goes into a seizure, just like a furnace would do.”
—Marilyn Wilkins
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The Financial PictureOperating Revenues and Expenses
Grants: 49%
Conference and Service Fees: 3%
Interest and Investment Income: 5%
Fundraising/Other: 20%
Donations: 23%
Client Services and Programs: 68%
Fund Development and Communications: 16%
Office Administration: 16%
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Special Thanks:
Anne AlgardBeth BennetDenise BowlesFlorence ChapmanJoan CousinsDoug CroweElaine DaviesJohn & Carole DicksonTelus Dollars for Dollars ProgramMinistry of Forests and Range
William & Joyce MorrowJames MurtaghFiona & Sam ParkerMarg RolfeRosemary SchoderbeckPatricia TrumperKen WilliamsDonald & Gwen WrightAndrew & Noel Yeoman
Diana & Robert FreundlichDick GunningArthur & Elinor HillsdenLaura JorgensenSarah & Gene KendallGordon & Ethel KennedyRalph Klassen & Barbara WernokDennis LoiselleNellie & Andrew MenziesRobert Meredith
Supporters ($250+)
Ministry of the Attorney GeneralBeatrice & Richard BagleyBear Mountain Arena Curling ClassicJoanna Billung-MeyerUrsula BroermannOdlum BrownPetro CanadaJean CooperDave CutlerKiwanis EsquimaltMargaret Finley
Heinz & Celia GeckBill & Karen HipwellWilliam HillsdenTom HumphreysVivian & John HutchisonBrent & Mia IversonBill & Mary JordanHarvey & Arlene LazarDavid & Patricia LovewellLynn McIvorBruce McFarlane
Linda MonaghanCarsten & Stephanie NachtigahlMary NemesCanem Systems Ltd.Thrifty Foods Ltd.Randall UlrichValerie WiseTerry JamesEstate of Beatrice Walker
Sponsors ($500+)
Benefactors ($1000+)
Patrons ($10 000+)
100.3 The Q/91.3 The Zone/A\ British ColumbiaCanpro Construction Ltd.Canwest PropaneJean CathroCoca-Cola BottlingColumbia FuelsBarbara CopelandCasa Cubana
Peggy HumphreysIsland Dairy Farms Assoc.Jack Links CanadaAlan & Holly MeadowsDorothea NissenNorgaard Neale CamdenP.E.C.S.F.Pepsi Bottling GroupR&R PROJECTZ
RBC Royal BankEstate of Leona RossGraham & Candice SmithEstate of Ida ValleauWestern Oil Services Ltd.DirectCash ATMUCB PharmaThe SickKids Foundation
Peninsula Co-op
Estate of Audrey Stephen
Charleton L. Smith Foundation
The Allen and Loreen Vandekerkhove
Family Foundation
V.I. Propane Services Ltd.
Vancouver Island Health Authority
United Way of Greater Victoria
Victoria Foundation
VEPC would like to thank its anonymous donors and the hundreds of donors who donated through the Peninsula Co-op Charity Golf Classic, Superwalk, Pouring for Parkinson’s, and its other events and activities. Every donation makes a difference in the lives of people living with epilepsy and Parkinson’s and their families.
Michael DomanPresident
Mary Claire LegunVice President
Bill MorrowTreasurer
Tony WadeSecretary
Jim CathroAlanna HolroydDavid MedlerLynn PollockDr. Alex MollSusan WardChristine Coates
VEPC Board of Directors2009/2010
VEPC Advisory Committees2009/2010
Epilepsy:
Lise AnthonyBrad ArnoldTerri BeatonJane HowlandPauline JohnsonDan MarpleJeannie MoggRuss MortonJames TaylorRoxeanne ThompsonSusan Ward (board liaison)Marilyn WilkinsEric Zinman
Parkinson’s:
Anne AlgardBarbara Andrew-SpainDoug CroweMike Doman (board liaison)Barry GellingNick GlowaskyCynthia JohnsonBetty McGrathRon MitchellMary NemesStan SojonksyJoan Wilson