KNOWLEDGE CONFIDENCE LIFE!

Victoria Epilepsy &Parkinson’s CentreAnnual Report 2009/2010

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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

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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

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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