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					Epilepsy
       Matters The Newsletter of the CANADIAN EPILEPSY ALLIANCE / ALLIANCE CANDIENNE DE L’ÉPILEPSIE




                                                                                                        EPILEPSY
                                                                                                         Canadian
Our History

T
                                                                                                             Alliance
Epilepsy Manitoba

      he Candian Epilepsy Alliance (CEA)       tive media portrayal of people with epilepsy
      / Alliance canadienne de L’épilep-       as their number one concern. The survey
      sie (ACE) was launched in April of       results provided the CEA/ACE with a
2000, with a vision of a society in which      strategic plan for the past five years.                          Alliance
                                                                                                             canadienne de
people affected by epilepsy could enjoy
good lives, attain education, sustain          “It is difficult to get a job when people                  L’ÉPILEPSIE
employment and have full participation         view you as crazy or retarded.”
in their communities.
                                                   “Self-esteem is adversely affected
                                                   when others view you as abnormal
This vision carried with it an enormous
                                                            or subnormal.”
responsibility. We wanted to improve the                                                        Inside this issue
quality of life for people affected by                        “Public attitudes eventually
epilepsy — but how would we do this?                            impact on public policy.”       Full-Time Employment ................4

One of the first initiatives of the CEA/ACE    It is estimated that there are 300,000 people
                                                                                                A Curriculum Linked
was the development of a Canada-wide           living with epilepsy in Canada, 30% of
                                                                                                Grade 5 Program ........................6
survey to understand the priorities of         whom struggle daily with profound social,
Canadians living with epilepsy.                financial and emotional challenges. The
                                                                                                Public Service Announcements..10

                                               epilepsy service community is poorly             Plan and Support ......................12
We needed to ask people living with epilepsy   funded and ill-equipped to address needs of
from across the country to rank the issues     this magnitude. With few resources, we
                                                                                                Volunteer Management..............14
most important to them.                        found ourselves extremely limited in reach
                                               and impact. In 2000, we made a decision
With this in mind, we not only launched        to pool our resources for the greater good.
our national organization, but the first       The newsletter produced in Toronto,
ever Canada-wide survey on epilepsy            became the CEA/ACE newsletter; the
                                                                                                This issue also highlights many

issues. We chose the 16 issues that our        PSA from Fraser Valley, BC, became the
                                                                                                of the CEA/ACE support services,

organizations were tackling locally. We        CEA/ACE commercial; the Edmonton
                                                                                                special events and public

asked Canadians from all provinces to rank     brochures and London Grade 5 program,
                                                                                                awareness programs.

how important each issue was, and to rank      Alliance initiatives. The whole has proven to
their top three areas of concern. We also      be far greater than the sum of our parts.
asked for their comments about these issues.   Duplication is avoided and each of our serv-
We then gathered all the completed surveys     ices is far richer than before. It is a simple
                                                                                                Epilepsy Matters
and compiled the responses. In total, 810      model that requires tremendous trust build-
                                                                                                is supported by:

surveys were completed by parents, adults      ing and patience, but it has meant the
and physicians.                                difference between survival and dissolution
                                               for many of us, and provides a wonderful
20.5% of the respondents ranked the nega-      foundation for the future.
Epilepsy Matters Vol. 3, No.2                                                                                                  page 2




Health Management
Victoria Epilepsy and Parkinson’s Centre




                                              Patient Voice provides clients an electronic way to track their own health, and see
                                              relationships between their epilepsy symptoms and possible contributing factors.


                                              exciting to see charts and graphs            The Patient Voice pilot project has been
                                              spring up on the screen enabling them        successful in several ways. People are




P
                                              to gauge their symptoms in relation to       using the system regularly, and are
                                              specific treatments and external inter-      expressing interest in continuing to use
                                              ventions. Prescription medication and        the system in the future. The creators of
       eople with epilepsy in Victoria are    levels of medication, over the counter       the system, IMI Innovation Management
       participating in an innovative         products, stress, environmental and          Inc, together with users of Patient Voice
       approach to health management          social factors, herbal supplements and       have identified key priorities for
and early results of the Patient Voice        teas, food and diet choices, and much        improvement. Those improvements will
pilot project are proving positive.           more can contribute to changes in            be implemented through 2007, and on
                                              seizure control.                             an ongoing basis thereafter.
A partnership between the Victoria
Epilepsy and Parkinson’s Centre and           We all know that physicians are very         There will always be room for
IMI Innovation Management Inc, Patient        busy and that the best way to use the        improvement, but with input from
Voice provides clients an electronic way      brief time we have with them is to pro-      patients, they can be assured that
to track their own health, and see rela-      vide concise information that is essen-      over time their voices will be heard.
tionships between their epilepsy symp-        tial to making wise treatment choices.       Personal electronic health records like
toms and possible contributing factors.                                                    Patient Voice are a very recent phe-
Parents and other caregivers can provide      By knowing what works well and               nomena, but are now recognized as a
this information on behalf of those too       what contributes to problematic symp-        key growth area of global health.
young or unable to use the system.            toms, Patient Voice users are better
                                              able to make adjustments to their            For more information, please visit
Some users have reported it very              personal healthcare routines.                www.patientvoice.ca or www.vepc.-bc.ca.




Innovative Services
Épilepsie Mauricie Centre du Québec


I n 2005, thanks to the involvement of business people
  in the automobile industry, and the funds they raised, Épilep-
sie Mauricie Centre du Québec was able to purchase its first ve-
                                                                    seizures for one year in order to be allowed to drive.
                                                                    Nevertheless, this is one year of having to manage without
                                                                    a vehicle, and explains why our service is so important!
hicle, providing access to health care for persons
affected by epilepsy. Why the need for a vehicle? When a per-       With transportation, patients are rapidly able to access
son that has a driver’s license is diagnosed with epilepsy, they    various services in order to improve their health. There are no
lose their license! The condition cannot be concealed as the doc-   specialized epilepsy centres in the Mauricie and Centre-
tor is under obligation to declare the diagnosis.                   du-Québec regions. Patients can only access these centres
                                                                    in Montreal, Quebec, and Sherbrooke. This medical trans-
In the past, a person affected by epilepsy was never per-           portation service is a first in epilepsy care in Quebec as well as
mitted to drive. However, with time, and due to various             other places in the country, and therefore is very important for
treatments, the conditions, along with waiting periods,             persons affected by epilepsy and their families.
have evolved. Today in Quebec, persons must be free from


    Canadian Epilepsy Alliance
Epilepsy Matters Vol. 3, No.2                                                                                                         page 3


                                                         ™
My-MEDIC-Notes
Epilepsy Durham Region




J   ust imagine you’re in a public place
    and you start having a seizure. You
    remain conscious but you are unable to
speak. People around you do not know
                                                essential details which will enable them
                                                to give appropriate medical treatment
                                                according to your medical wishes. In
                                                essence, allowing you to take control and
                                                                                               for you, the paramedics and medical staff
                                                                                               during an emergency. The program
                                                                                               doesn’t require the use of a computer to
                                                                                               access medical information; its paper for-
what to do, panic and call 911. The para-       indirectly advocate for yourself.              mat enables responders to scan pertinent
medics are unable to determine what                                                            information quickly and easily.
medication you are on or who they should        A weather-resistant durable exterior door
contact (whether a next of kin or physi-        label alerts paramedics you have the           Recently a four-year-old boy had a con-
cian). Not being able to advocate for your-     My-MEDIC-Notes pouch posted on your            vulsive seizure at recess and caused dam-
self is a scary scenario but unfortunately it   refrigerator door. A medical form is pro-      age to his face. The school immediately
is one potentially faced by people with         vided to list your identifying traits, emer-   contacted 911. When the paramedics
epilepsy every day.                             gency contacts, substitute decision maker,     arrived, the school was able to provide the
                                                insurance information, medical conditions,     boy’s My-MEDIC-Notes, and the para-
Epilepsy or a seizure disorder may present      medications, physicians, hospitalizations,     medics were able obtain all the accurate
itself in many forms and can represent          other special wishes and more. This is         information about the boy, his condition
many challenges for parents, caregivers,        housed in the storage pouch. The durable       and medications by the time the parents
and educators. In response to this need,        red foil storage pouch, easily recognized by   arrived to accompany him to hospital. It
Epilepsy Durham Region in association           paramedics, has a re-sealable top and ex-      removed the “stress” from the situation
with Health Assured Financial Group’s           pandable bottom to hold items such as EEG      and the My-MEDIC-Notes did the com-
Wellness Programs Division have devel-          and MRI readings. Its clear oval window        municating providing the parents with
oped My-MEDIC-Notes program.                    reveals photo ID and its magnetic back         peace of mind that their child was being
                                                holds contents up to one pound firmly on       taken care of.
My-MEDIC-Notes is an Emergency                  your fridge door. It can also stand upright
Response Action Plan that may aid in            on a table surface. A supplementary med-       There are so many applications for
providing assistance for those who              ication chart keeps your kit current as your   this program - for parents, university
cannot advocate on their own when a             medications change. An instruction book-       students, seniors living with a disability,
seizure occurs and emergency assistance is      let provides details on what and how to or-    those living alone, or simply those who
required. It contains all the pertinent med-    ganize your plan.                              drive a vehicle - the list is endless. For more
ical information paramedics require, as                                                        information about My-MEDIC-Notes
well as providing hospital personnel with       My-MEDIC-Notes kit is very user-friendly       program, visit www.epilepsydurham.com



Adult Social Program
Epilepsy Saskatoon



A    s with many epilepsy organizations, addressing the
     social needs and skill development of members is some-
times a challenge. Add the fact that some members might
                                                                        close knit community of others who know what it is like to live
                                                                        with seizures. Social outings for this program have included
                                                                        game night, swimming, bowling, the symphony and even a
even be somewhat housebound by their seizures and the                   jazz festival.
challenge is even greater. Epilepsy Saskatoon has come up
with a solution: AWE-Some Adults with Epilepsy — a pro-                 Epilepsy Saskatoon’s program has had great success with
gram they’ve run for the past five years.                               over 100 people participating at different times in the past
                                                                        five years. AWE-Some Adults with Epilepsy runs two to
Gathering people together who have seizures creates many op-            three times a year, and will continue to be offered thanks
portunities. They can be around people who understand their             to the generous support of the United Way of Saskatoon
difficulties and celebrate their successes. It also gives them a        and Surrounding Area.


                                                                                                  www.epilepsymatters.com
Epilepsy Matters Vol. 3, No.2                                                                                                 page 4




Full Time Employment
Epilepsy Newfoundland & Labrador


                                                                         Previously Loved Clothes & Things currently provides
                                                                            full-time employment to twenty-six individuals.

                                                                      they jump in with both feet and open their own thrift store?”

                                                                      The Board decided to take the risk and open their own thrift
                                                                      store.

                                                                      Once the decision was made, it was full steam ahead. ENL
                                                                      rented a 3,000 sq. ft. storefront, and began organizing. They
                                                                      would be finished with Value Village February 1998, and
                                                                      would open their own store in March.

                                                                      Previously Loved Clothes & Things opened its doors March
                                                                      1998.




W
                                                                      After just four months in business we began to make a profit,
                                                                      and have continued to do so for the nine years since.

            hen the multi-billion dollar Value Village thrift store   We have moved twice, and currently occupy 12,000 sq. ft of
            decides to move into a community, they look for the       space. Because of the varied nature of our business we are able
            charity with the best reputation in town. In 1997, in     to provide work experience and volunteer placements to per-
St. John’s, Newfoundland that was Epilepsy Newfoundland &             sons with a very limited set of abilities and/or social skills.
Labrador (ENL).
                                                                      We provide the community with high quality, low cost, used
“We were flattered when Value Village sought us out,” says            clothing and continue to make money, which covers the cost
ENL Executive Director, Gail Dempsey. “Value Village had              of some of our programs and services in the community.
over 200 thrift stores worldwide, and their claim to fame was
that they partnered with a charity in each community. The
charity called homes looking for donations of used clothing
and household items, which they sold to Value Village for a
set, predetermined price.”

After careful consideration, and much research, ENL signed a
one-year contract with Value Village. The contract allowed ENL
to hire approximately a dozen of their own people, full time.

“We had telemarketers who did the calling, a confirmation
clerk, supervisor, and van drivers. We learned the system
very quickly, and again, because of our well-established
reputation, donations poured in.”

Behind the scenes, however, all was not rosy. ENL had to
take extraordinary measures to ensure that the terms of the
contract with Value Village were met, and the ENL Board of
Directors decided that at the end of the one-year contract the
relationship would be severed. Now Epilepsy Newfound-
land & Labrador had a huge decision to make. Did they lay
off all the people who were doing such a great job, or did


    Canadian Epilepsy Alliance
Epilepsy Matters Vol. 3, No.2                                                                                               page 5




Summerfest
Epilepsy Ontario


                                            a camp environment filled with fun ex-      ical staff who reside on the site, as well
                                            periences and memories that last a life-    as an on-call local doctor to provide
                                            time. The camp attempts to address          24-hour care. Epilepsy Ontario provides
                                            some of the social and psychological is-    additional nursing staff and when nec-
                                            sues that children who are living with      essary one-on-one workers. Although
                                            epilepsy may experience.                    some special supervision may be neces-




S
                                                                                        sary for children with epilepsy and
                                            The program was established in the          seizure disorders, it is important to real-
                                            early 90’s with help from the Hospital      ize that over-protection may cause chil-
     ummerfest, formerly Spike and          for Sick Children, Division of Neurol-      dren to become dependent and lose
     Wave, is a summer integrated           ogy and Epilepsy Agencies throughout        self-confidence. This camping experi-
     camping event for boys and girls       Ontario. To date, over 360 children         ence helps the child develop a sense of
ages seven to 16 who have epilepsy.         have been sponsored at camp for al-         independence and personal fulfillment.
This one or two week program in July        most 500 camper weeks.
provides children with an exciting inte-                                                The camp has been a tremendous
grated and independent camping expe-        Summerfest staff includes a health          success for the campers—making a dif-
rience. Epilepsy Ontario helps to provide   services director and professional med-     ference in their lives.



An Educational Intervention for Pediatric Patients
Pediatrics Department, Neurology Service of the Sainte-Justine University Hospital Center,
in affiliation with Épilepsie Montréal Métropolitain


T    his educational intervention program was developed
     based on a literature review, various existing
programs, and the experience of several different profession-
                                                                  impact of the program on the assimilation of knowledge
                                                                  about epilepsy, as well as on the use of resources. The proj-
                                                                  ect has made it possible to indirectly measure children and
als in charge of the research project.                            their families’ adaptation strategies via evaluations of self-
                                                                  esteem, parental stress and quality of life.
We met with children who have recently been diagnosed
with epilepsy and their families. This is a research project      The project is presently completed and some of the results
associated with a clinical intervention program intended for      have already been displayed in a poster presentation at the
children from six to 12 years old.                                North American Regional Epilepsy Congress in San Diego in
                                                                  December 2006. All of the results obtained are being com-
The goal of this program is to help children and their fami-      piled and should be published at a later date.
lies adjust to the diagnosis of epilepsy and adapt to this new
condition, through concerted medical, psychological and           The following professionals were involved in the project:
social interventions. It favours a multidisciplinary approach     I Lionel Carmant, neurologist
involving the doctor, the nurse, the social worker, the           I Dominic Chartand, nurse
neuropsychologist, and the community group.                       I Line Deschamps, social worker
                                                                  I Catherine H. Sauerwein, neuropsychologist
The program is spread over several meetings to ensure             I Sarah Lippé, neuropsychologist
better assimilation of the information communicated. There        I Milagros Salas Prato, researcher/coordinator
are individual as well as group meetings, for children as well    I Catherine Vanasse, neuropsychologist
as their parents.                                                 I Aurore Therrien, director-general of Épilepsie Montréal
                                                                    Métropolitain
The research project has allowed us to measure the real


                                                                                           www.epilepsymatters.com
Epilepsy Matters Vol. 3, No.2                                                                                            page 6




A Curriculum Linked Grade 5 Program
Epilepsy Support Centre London & Area




M
           ost community epilepsy
           organizations prioritize edu-
           cation in schools. Collectively,
we recognize that educating children
and their teachers is a proven strategy
for increasing knowledge, tolerance and
acceptance of individuals living with
                                               Like many parents, they were afraid
epilepsy. Ideally, a parent or a classroom
                                              that adults and children would avoid
teacher will call the community
                                                their son, restrict his activities and
organization to request an epilepsy
                                              treat him differently if they knew that
presentation. These proactive parents
                                                         he had ‘epilepsy’.
and educators have recognized the
importance of seizure first aid train-
ing. They know that an informed               their outreach strategy. The ESC held
classroom teacher is a compassionate          several focus groups of parents, chil-
and tolerant role model for the child         dren and educators and asked them to
who has seizures.                             propose content for a standardized
                                              epilepsy classroom unit. The local
Too often parents choose to hide their        school board provided a science cur-
child’s seizures from educators and the       riculum writer who linked the epilepsy
consequences of inaction can be pun-          content to the provincial curriculum.
ishing. Four years ago, a 13-year-old
boy in London, Ontario had a convul-           We recognize that educating children
sive seizure in his classroom. His            and their teachers is a proven strategy
teacher did not know that the child            for increasing knowledge, tolerance
had epilepsy and she had no seizure               and acceptance of individuals
first aid training. She panicked and                   living with epilepsy.
then injured him when she placed an
object in his mouth.                          Research indicated that children
                                              between the ages of nine and 11 should
The next day, his distraught parent           be targeted for the program if our goal
called the Epilepsy Support Centre            was to teach knowledge and foster
(ESC), a Canadian Epilepsy Alliance           empathy toward people with epilepsy.
member, stating that their son refused        This was developmentally an ideal age
to go back to school. His Principal also      since children in Grade 5 are becoming
requested an education presentation           aware of other people’s perspectives and
for the entire school. Everyone wanted        are starting to learn about the character-
to restore the child’s dignity and reputa-    istics that make a good friend. We rea-
tion. In conversation, the ESC learned        soned that we could successfully
that this was not the teen’s first seizure    educate the entire community ‘one year
and that he was diagnosed with                at a time’.
‘seizures’ at age three. His parents had
chosen not to disclose his disorder to any    The standardized curriculum program
of his classroom teachers, neighbours,        was written, piloted, critiqued and
coaches or peers.                             revised. All four school boards in
                                              Southwestern Ontario have endorsed           Worksheets are used by classroom
If parents were reluctant to disclose         the program. In the past four years,         teachers to grade a child’s knowl-
that their child had epilepsy it became       more than 20,000 children aged nine to       edge on the information given dur-
incumbent upon the ESC to change              11 in our area alone have received the       ing the program.


    Canadian Epilepsy Alliance
Epilepsy Matters Vol. 3, No.2                                                                                                 page 7



   In January 2007, the Anita Kaufmann Foundation purchased the program. They will work with the Epilepsy Foundation
                  of America to deliver the program to Grade 5 children in New Jersey and New York states.

“Thinking about Epilepsy” Elementary       about Epilepsy” Elementary Program
Program. The program is interactive        was successful in significantly improv-
and appeals to all learning styles.        ing knowledge and in improving
                                                                                         Many individuals, corporations and

Most importantly, we have empirical        attitudes about epilepsy in children
                                                                                           foundations were involved in the

data to prove that it works!               aged nine to 11. The program
                                                                                           development and the evaluation

                                           increases epilepsy knowledge; teaches
                                                                                       of this program. We would like to thank

A randomized cluster control trial was     seizure types; reduces the fear people
                                                                                               our generous supporters:

conducted. Twenty-four schools from        have of epilepsy and seizures; teaches
two Ontario school boards participated     seizure first aid; promotes tolerance
                                                                                            Funding for the Development

in the research. A total of 783 children   and acceptance of those affected; rein-
                                                                                                    of Program:

were given the 36-item questionnaire to    forces that epilepsy should not stand
                                                                                              The Citigroup Foundation

measure their pre and post intervention    in the way of achievement and en-
                                                                                          United Way of London-Middlesex

epilepsy knowledge and attitudes. The      courages disclosure for those living
                                                                                           United Way of Sarnia-Lambton

research proved that the “Thinking         with epilepsy.
                                                                                     Province of Ontario - Ministry of Citizenship

                                                                                     Funding for the Evaluation of the Program:
                                                                                     Social Sciences and Humanities Research
                                                                                             Council of Canada (SSHRC)
                                                                                     Research Alliance for Children with Special
                                                                                                   Needs (RACSN)
                                                                                         Lawson Health Research Institute
                                                                                              (Internal Research Fund)
                                                                                          Child Health Research Institute
                                                                                              (Internal Research Fund)

                                                                                               Community Partners:
                                                                                     The Thames Valley District School Board
                                                                                            Ingrid Astrid, Dr. Steve Killip
                                                                                      London District Catholic School Board
                                                                                                   Terry Spencer
                                                                                        The University of Western Ontario
                                                                                           Department of Epidemiology
                                                                                     and Biostatistics; Dr. Alexandra Martiniuk,
                                                                                                Dr. Kathy Speechley




Students at Holy Cross Catholic School in London, Ontario recently received the Grade 5 Program in their classroom.
The students’ participation in the various components of the program play a big part in its overall success.


                                                                                     www.epilepsymatters.com
Epilepsy Matters Vol. 3, No.2                                                                                               page 8



Evaluation of an Epilepsy Education Program
Dr. Alexandra Martiniuk, Dr. Kathy Speechley, University of Western Ontario,
Department of Epidemiology




A
       36-item questionnaire was
       designed to assess Grade 5
       (ages 9 to 11) students’ knowl-
edge of and attitudes about epilepsy
and to evaluate changes in knowl-
edge and attitudes following the
“Thinking about Epilepsy” classroom
program. The questionnaire con-
tained 18 knowledge, 10 attitude and
8 demographic questions.


    A highly significant increase in
   knowledge and positive attitudes
  was observed for the intervention
 group compared to the control group
   following the epilepsy education
   program (p<0.001). The education
  program was successful in meeting
            its objectives.                 On average those students who received the education program about epilepsy
                                            (intervention group) gained about 8 attitude points, compared to those students who did
                                            not receive the education program who only gained about 2 points after one month of
In total, 24 schools (783 individuals)      follow-up. This was a statistically significant difference (p<0.001)
were cluster randomized. Those in the
intervention group had an average
11.8-point increase in knowledge
one month following the program,
compared with the control group in-
crease of 1.64 points out of a total of
50 points. The classroom program was
responsible for 63% of the variation in
post program epilepsy knowledge
and 28% of the variation in post pro-
gram attitudes about epilepsy.

For more information about the
research please see the June 2007 edition
of the journal Epilepsy & Behavior.

Conclusion:
This study revealed that prior to the
education program, on average only
about 23/57 of knowledge questions
were answered correctly. Baseline at-
titudes toward people with epilepsy
were, on average, fairly neutral (32/50
mean score). A highly significant           vention group compared to the                education program was successful in
increase in knowledge and positive          control group following the epilepsy         meeting its objectives.
attitudes was observed for the inter-       education program (p<0.001). The


    Canadian Epilepsy Alliance
Epilepsy Matters Vol. 3, No.2                                                                                                    page 9



Mentoring and Scholarships
The Epilepsy Association of Nova Scotia




T
      he Epilepsy Association of Nova         mittee rates each applicant and decides       check the e-mail, act as receptionist and
      Scotia (EANS) has been offering         on the winners.                               carry out whatever administrative tasks
      its Scholarship/Bursary program                                                       need to be done that day. When neces-
since 2002. Every January, a letter goes      Recent recipients have had such diverse       sary, a staff member will sit with the par-
out to each high school, university and       goals as becoming a journalist, working       ticipants and teach specific skills or coach
community college campus in the               in the tourism industry and performing        the volunteer.
province announcing the availability of       as a professional jazz violinist. At EANS
two scholarships and one bursary, each        we feel that in a small way we are helping    The goal of the mentoring program is to
valued at $500, for students with epilepsy.   these outstanding young people to             provide training in computer skills and
                                              achieve their educational and career goals    administrative work in a real office
 Applicants must be at least 18 years of      in spite of the challenges they face          environment, so that participants can be
age and have been accepted at a post-         through having epilepsy.                      better prepared to enter or re-enter the
secondary institution. They must have                                                       workforce if they so desire. Some volun-
lived in Nova Scotia for at least 12          EANS has also started up a small              teers have gained the ability to use mod-
months and be a Canadian citizen or           mentoring program for several of its          ern technology to their own advantage.
landed immigrant.                             member/volunteers who frequently
                                              helped out in the office and who had ex-      Mastering new skills and being able to
Along with a physician’s signature ver-       pressed an interest in learning more          provide real assistance in the EANS
ifying the diagnosis of epilepsy and two      about computer and general office work.       office has resulted in increased self-
references, applicants must provide a         This pilot project has involved six partic-   esteem and confidence in those who
written submission about their educa-         ipants since its inception.                   have been taking part in the program.
tional and career goals, how epilepsy                                                       Several of the participants have become
has affected them, and how this further       Each participant comes into the office one    very interested in surfing the net and are
education will make a difference in their     morning a week and is put in charge of the    determined to acquire their own com-
lives. The Association’s Education Com-       front desk. Participants answer the phone,    puters very soon.




Tutoring Program
Victoria Epilepsy and Parkinson’s Centre


F   or the past few years, we have been offering epilepsy
    awareness programs for school children and school per-
sonnel. Parents and teachers, or children themselves make
                                                                     nership with the University of Victoria’s Dept. Of Educa-
                                                                     tional Psychology and Leadership Studies, and plans are to
                                                                     maintain this as an ongoing service.
the request for classroom teaching sessions. 2007 is the third
year that we've also offered epilepsy teaching to grade five         Graduate students in special education are teamed one to one
classes, by modeling the program to fit with the Ministry of         with a child with epilepsy, to assess learning needs and
Education life science curriculum in B.C.                            develop appropriate, individual interventions for each child.
                                                                     Parents will also receive support and instruction so that they
Nearly 2,000 students and 225 teachers learned about epilepsy        can provide consistent follow-up with their child.
in the last two years, thanks to funding by the United Way of
Greater Victoria. While we have consistently received excellent      How exciting that learning specialists will be developing in-
feedback from teachers and parents about our programs, we've         terventions for children whose learning problems are caused
also realized there's more to be done to assist children with        by epilepsy! We’re aiming for better long-term educational
epilepsy in overcoming their learning difficulties.                  and vocational outcomes for children with epilepsy, by
                                                                     offering practical interventions that will improve school per-
This year, we have initiated a new tutoring program in part-         formance and self esteem.


                                                                                                www.epilepsymatters.com
Epilepsy Matters Vol. 3, No.2                                                                                                        page 10




Public Service Announcements
The Center for Epilepsy and Seizure Education in British Columbia




T
      he Center for Epilepsy and Seizure Education in                 perpetuate stigma. These PSA’s have been viewed by millions
      British Columbia has developed The ABC’s of                     of Canadians in rural and urban Canada. The development
      Seizure Management Program. The program consists                of the PSA’s was supported by thousands of hours of
of seven public service announcements (PSA’s), and edu-               volunteer contributions. The PSA’s have also been used in
cational posters.                                                     classrooms to teach school-aged children and in health care
                                                                      settings to educate families and their service providers.
The ABC’s of Seizure Management Program teaches Canadi-
ans to recognize different seizure types, perform the appro-          These PSA’s have been aired on Canadian television
priate first aid and challenge existing stereotypes that              23,279 times!




Tonic-Clonic Seizure First Aid                                        Epilepsy and Employment
The first PSA teaches us what to do when someone is having a          This PSA is filmed in the corporate boardroom. The human
convulsive seizure. The PSA is filmed on a playground. One of the     resources manager is asked by the CEO to rank the final candidates
children has a seizure and his peers demonstrate the correct first    for a new position. The human resources manager states that there are
aid. They also dispel the myth that you must put something in the     two names remaining but one of the candidates has epilepsy. Her tone
mouth of a person having a seizure.                                   suggests that she does not feel that this candidate is a suitable choice
                                                                      because they have epilepsy. The CEO removes his eye glasses and tells
                                                                      his colleague that he “has epilepsy”.




Claire’s Race
Epilepsy Association of Nova Scotia



T   he book Claire’s Race is based on a true story of a girl, Claire, who was five years-
    old when she was diagnosed with Rasmussen’s Encephalitis - a rare form of
epilepsy. It tells the story of how she had to wear a leg brace and learn to walk again
after a serious operation.

The very inspirational story goes on to tell how Claire succeeded in achieving her goal
of taking part in a cross country meet.

 Royalties from the sale of the book go to the Epilepsy Association of Nova Scotia. The book re-
tails for $8.95 and can be ordered online.


                                                                                                   www.epilepsymatters.com
Epilepsy Matters Vol. 3, No.2                                                                                            page 11




Epilepsy in Children and Adolescents
Épilepsie Montréal Métropolitain




É
       pilepsie Montréal Métropolitain      neurologist and pediatrician; and          Community Support (Aurore Therrien,
       was invited to participate in the    Michel Vanasse, neurologist); Types of     executive director of épilepsie
       writing of the book L’Épilepsie      Epilepsy (Anne Lortie, neurologist and     Montréal Métropolitain).
chez l’enfant et l’adolescent (Epilepsy     pediatrician); Diagnostic Methods
in Children and Adolescents). This          (Philippe Major and Paola Diadori,         This book is the result of a collabora-
invitation was the fruit of a long asso-    pediatric neurologists); The Genetics of   tion with all the members of the
ciation between health professionals of     Epilepsy (Céline Odier, resident neu-      Neurology Service and their colleagues
Sainte-Justine Hospital and Épilepsie       rologist; and Patrick Cossette, neurol-    at the Epilepsy Clinic of Sainte-Justine
Montréal Métropolitain. The book also       ogist); Medical Treatment of the           Hospital. More than simply being a
testifies to the importance of such an      Epileptic Patient (Guy D’Anjou, pedi-      book for the layman, it presents up-to-
association for patients and their          atric neurologist; and Anne Lortie);       the-minute scientific, clinical, and psy-
families, as well as to the benefits that   Intractable Epilepsy (Elsa Rossignol,      chosocial information on epilepsy.
result from multidisciplinary interven-     resident in Neuropediatrics; Stéphanie     “This book shows how we take care of
tions on behalf of children and their       Benoåt, nutritionist; Anne Lortie; and     children at Sainte-Justine Hospital,”
parents, in which a third sector organ-     Lionel Carmant, pediatric neurologist);    emphasizes Dr. Anne Lortie. We be-
ization participates.                       and The Importance of Multidiscipli-       lieve that it also recognizes third sector
                                            nary Case Management (Dominique            organizations as credible and essential
In the preface, written by Dr. Anne         Chartrand, nurse in neurology).            partners in the multidisciplinary
Lortie, chief of neurology, we learn that                                              approach. Interventions on the part of
the book was written to help families,      The book also devotes a second section     third sector organizations are intended
health and educational professionals        to the psychosocial aspects of epilepsy:   to be complementary to services of-
working with children and adolescents       Epilepsy and Development (Anne Lor-        fered by the health and social services
with epilepsy, and older patients to        tie; Élaine Garant, speech-language        network. It is possible for third sector
better understand this condition, and       pathologist; and Catherine-Marie           organizations to work in collaboration
thereby enable those with epilepsy to       Vanasse, neuropsychologist); Learning      and still conserve their own identities
live full lives.                            (Catherine-Marie Vanasse and Maryse        and methods of intervention.
                                            Lassonde, neuropsychologist); Psycho-
With this aim, the authors examine all      logical Aspects (Pierre Pelletier,         This book was published by Éditions du
the medical aspects of epilepsy:            psychologist; and Line Deschamps,          Centre hospitalier universitaire Saint-
Epilepsy Basics (Albert Larbrisseau,        social worker); and Psychosocial and       Justine.




Educational Booklet Series
The Edmonton Epilepsy Association



T   he Edmonton Epilepsy Association is one of
    the founding members of the Canadian
Epilepsy Alliance, and provides educational pro-
                                                                            In 2003, utilizing a grant from the Edmonton
                                                                            Community Lottery Board, the EEA spent the
                                                                            better part of a year developing a series of 12 Ed-
grams, member activities, advocacy and coun-                                ucational Booklets, thousands of which have since
selling services, not just to Greater Edmonton but                          been widely distributed throughout Canada and
throughout Northern Alberta and into the North-                             some of the Northern United States. The EEA’s
west Territories. There are approximately 20,000                            participation in the CEA is recognized on every
individuals who live with Epilepsy within the                               one of these brochures, and special bulk pricing
EEA’s area of operation.                                                    is provided to CEA Members.



                                                                                          www.epilepsymatters.com
Epilepsy Matters Vol. 3, No.2                                                                                                      page 12




Employment Support
Epilepsy Toronto




F
      or more than three decades, Epilepsy Toronto has been            tive communicators and self-advocates.
      offering employment supports to persons with epilepsy. Uti-
      lizing a variety of means including individual counselling,      Employment Workshops
group work, worksite visits, email, our website and employment         This series of four, two-hour workshops is offered a couple of times
specific forums, we have been able to help many people across the      per year. Topics include: Interview Skills and Job Search Tech-
province prepare for, obtain and retain competitive employment.        niques; Résumés and Cover Letters; Disclosure, Employment
                                                                       Rights, Workplace Safety and How to Ace that Job!
Provincial Government Approved Service Provider
Epilepsy Toronto has once again been approved by the Ontario           Employment Resources
Disability Supports Program - Employment Supports for job              Epilepsy Toronto offers a comprehensive library of employment
retention services. With our unique experience in employment and       resources in print, and a dedicated computer classroom for instruc-
epilepsy, we offer consultation and solutions to the employee and      tion and to assist with job search strategies. We have created in ex-
their employer to ensure safety and productivity. Often we will pro-   cess of 60 Employment Fact Sheets that deal with a variety of topics
vide epilepsy awareness training to the staff of the organization.     related to finding and keeping that ideal job. From our website, peo-
                                                                       ple can access a number of very active epilepsy related forums
Weekly Job Finding Club                                                including the employment forums that focus on featured jobs, job
In the last year, over 70% of the participants have moved on to paid   finding club activity and employment concerns.We have developed
employment or job specific training. The JFC is an extremely           excellent rapport with a number of employers and agencies that
effective forum for our members to swap job leads and job search       have a desire to hire people with epilepsy including our local Busi-
strategies. Perhaps more important though is that it provides an       ness Improvement Area and feature their current jobs in our job
opportunity for our members to discuss and gain support from           binder.
each other in epilepsy specific areas such as disclosure, accommo-
dation, workplace safety and job retention. Guest speakers have        Epilepsy Toronto in the Community
included all of the major banks and many national corporations,        Throughout the year, Epilepsy Toronto Employment Consultants
placement agencies, employment lawyers, professional recruiters,       attend and promote our services at job fairs, career and health
job boards and of course successfully employed members.                events at post-secondary institutions and corporate Wellness Days.

Assertiveness Training                                                 We meet with dozens of employers each year that want to hire and
Offered in six, two-hour sessions a couple of times per year, this     retain employees as well as better serve customers with epilepsy.
program has become very much in demand in our area with many           In workplaces that have an employee with epilepsy, we do work-
requests coming from people who do not have a disability as well       place assessments, suggest accommodations and provide aware-
as personnel from local employment resource centres. The pro-          ness and sensitivity training to co-workers, thereby ensuring that
gram has become a must-attend not only for those seeking               the employee is able to work to optimal capacity with safety, dig-
employment but also for people wanting to become more effec-           nity and respect.



Art and Poetry Contest                                                 van Gogh or create an original in his style.

                                                                       The contest raised awareness for epilepsy and encouraged
Epilepsy Kingston                                                      students to talk about seizures.

Epilepsy Kingston recently entered the world of art apprecia-             Epilepsy Kingston answers 1-866-EPILEPSY for the entire
tion when all students in the Kingston area were invited to               613 area code. If you have any questions or concerns about
compete for prizes in the “Vincent van Gogh Enters Kingston               epilepsy, please call and we will direct you to the nearest
Classrooms Event”.                                                        agency in your area. Currently there are part-time offices in
                                                                          Napanee, Brockville and Ottawa, and we are working with
Students were invited to write an original poem about van                 Epilepsy Ontario to establish a new office in Belleville.
Gogh, his struggle and his legacy in spite of having epilepsy.            For hours of operation contact 1-866-EPILEPSY.
The art option challenged the students to replicate a work by


     Canadian Epilepsy Alliance
Epilepsy Matters Vol. 3, No.2                                                                              page 13




High School Biology Program
Epilepsy Support Centre London & Area




T
      he Epilepsy Support Centre in        sciences at the University of Western
      London, Ontario partnered            Ontario were also part of the team.
      with the School of Nursing at        The team wrote a 240 minute epilepsy
the University of Western Ontario to       unit. This unit was pilot tested in five
survey teens aged 14-18 to determine       senior science classes in London,
their knowledge and attitudes about        Ontario. The unit includes labs, case
epilepsy. A 22-item survey was             studies, videos, a student and a
administered to 1196 teens in two          teacher manual. Content of the
local high schools. Teens were asked       program includes: the nervous sys-
knowledge questions including the          tem, action potentials, lobes and areas
causes, classification and first aid for   of the brain affected by seizures, first
seizures. They were also asked             aid, diagnosis, treatment and stigma.
attitude questions. Would they date        The unit is currently in the publica-
a teen with epilepsy or tell their         tion phase and will be available for
friends if they had the condition? Do      implementation across Canada and
teens with epilepsy play sports and        the United States in early 2008.
do they attend regular classes? Can a
youth with epilepsy drive a car?           Funding for the unit is provided by:
Overall, it was demonstrated that          I United Way of London/Middlesex
teens have relatively poor knowledge
and some negative attitudes towards        I Research Alliance for Children with
peers with epilepsy.                         Special Needs (RACSN)

The Canadian Epilepsy Alliance sur-        I The Walter J. Blackburn Foundation
veyed 810 Canadians affected by
epilepsy. In this survey, 11.5% of the     I The Anita Kaufmann Foundation
respondents identified that their top
concern was that the medical com-          I Libro Financial Group
munity is not always properly trained
about how to inform and educate            I Ontario Trillium Foundation
people about their condition.

Taking into consideration the results
of these two surveys, the Epilepsy         Partners for the unit are:
Support Centre gathered a team of          I London Health Sciences Centre
professionals and asked them to              Epilepsy Programme
develop an interactive curriculum
unit to promote epilepsy as a career       I University of Western Ontario
choice for future health scientists
and to increase senior high school         I London District Catholic School
students’ knowledge of, and positive         Board
attitudes about epilepsy.
                                           I Thames Valley District School Board
A curriculum writing team was
created and included high school sci-
ence teachers and a London Health
Sciences Centre Epilepsy Programme
neurologist. Students from the facul-
ties of medicine, nursing and health


                                                                                      www.epilepsymatters.com
Epilepsy Matters Vol. 3, No.2                                                                                                      page 14




Volunteer Management
Epilepsy Huron-Perth-Bruce




E
      pilepsy Huron-Perth-Bruce is a          themselves, but that does not stop them          way that will keep them motivated and en-
      local not for profit organization       from offering a helping hand.                    thused about their volunteer work. Once a
      governed by a Volunteer Board of                                                         year, we recognize individuals for their vol-
Directors. We are located close to Lake       Volunteers can be found wearing                  unteer efforts. A night full of entertainment
Huron in the little town of Clinton,          many hats within the organization:               and delicious food is our way of saying
Ontario. We provide support services to all   Peer to Peer Mentor, Puppeteer, Board            thank you for all their hard work.
three of the counties mentioned in our        Member, Golf Committee Member,
name. This area, classified as rural, is      Glad Day Coordinator, Administration
extremely large geographically and            Assistant, Support Group Assistant and
renowned for having some of the most          Santa Claus, to name just a few.
                                                                                                     Celebrating Volunteers
beautiful sunsets.
                                                                                                      Across the Country
                                              Collectively, they raise the level of public
Our organization would not exist if it        awareness about epilepsy in their commu-                       Epilepsy Toronto
were not for the assistance of our many       nities. Last year, these amazing citizens                      850 Volunteers
volunteers. That’s why every April we         clocked over 3,006 hours of volunteer serv-               Epilepsy Support Centre
gather as a volunteer organization and        ice. That translates into $36,072 worth of in-         Over 12,350 hours of volunteer
celebrate all of the work done by these       kind donations to Epilepsy Huron Perth.                      support last year
wonderful people. Our volunteers vary
                                                                                                        The Centre for Epilepsy and
in age, gender and religious beliefs but      It is fair to say that our organization would              Seizure Education in BC
the one thing they have in common is          not be able to operate without the help of            Received the equivalent of $45,000
supporting those affected by epilepsy.        these amazing people. We believe that it is          in volunteer contributions to create
Many of our volunteers have epilepsy          vitally important to recognize them in a           just one public service announcement
                                                                                                    Epilepsy Newfoundland & Labrador
                                                                                                    Recruited 2,000 volunteers for a
Workshops and Support                                                                                    door-to-door campaign


Epilepsy Niagara


E   pilepsy Niagara is a non-profit, charitable agency dedicated
    to improving the quality of life of people in the Niagara
region who are affected by epilepsy.
                                                                      We have a variety of versions to gear towards target age groups
                                                                      adult, youth and children, with appropriately developed materi-
                                                                      als to engage each group and address age specific issues. We are
                                                                      also currently in the process of developing a workshop series for
Wellness Workshops                                                    parents and the unique concerns and issues that they face.
The Wellness workshop series is a skill development course
for those who are directly affected by epilepsy. This workshop        Peer to Peer Support
will consider the entire individual to assist them in                 People of all ages want to help each other, yet often don’t know
examining how their lifestyle relates to their seizure frequency      how to do this. Peer helping is simply helping other people. When
and overall sense of wellness. The workshop will address:             people experience frustrations, worries, concerns, and other life
I How to engage a support system                                      events, they typically turn to their friends, or peers, not profes-
I Understanding epilepsy from a medical approach                      sionals, for help, advice, practical assistance and support.
I Identifying and avoiding triggers to seizures
I Tracking emotions and their effect on wellness                      Peers are provided with a trained supporter and are matched based
                                                                      on personal experiences with epilepsy. Peers may communicate by
I Managing the external environment
                                                                      telephone, or internet, as often as they deem appropriate.
I Managing the internal environment
I Enhancing control of stress in your life.                           The main purpose of this program is to enhance the personal
I Celebrating the uniqueness & diversity of Epilepsy                  support network of those affected by epilepsy by connecting
I Developing and implementing your wellness plan.                     them with someone who has walked in their shoes.


    Canadian Epilepsy Alliance
Epilepsy Matters Vol. 3, No.2                                                                                 page 15




Special Event
Epilepsy Toronto




T
      he Toronto International Busk-
      erfest was established in 1999
      by Epilepsy Toronto in an
attempt to partner entertainment,
business and charity sectors of the
community to create a vibrant new
entertainment experience for our
city that would contribute to
tourism and economic develop-
ment and, at the same time, garner
much needed awareness of
epilepsy in the public at large.

Set in the heart of the historic St.
Lawrence Market neighborhood,
Buskerfest offers four days and four
nights of mesmerizing theatre in the
Street. Comedians, contortionists,
magicians and mimes, sword-swal-
lowers and human statues ply their
unique trade to the awe and amaze-           ness some of the most energetic and
ment of audiences young and old.             creative entertainment imaginable,
                                             from Tupperware symphony to high-
Buskers are gutsy street performers          wire belly dancing to flaming trapeze;
who fly by the seat of their pants,          each entertainer vying to outperform
sometimes literally! They boldly take        the last for a toss of a coin in the hat!
their talents right into the audience,
where spectator participation ensures        Rapidly emerging as one of the lead-
every set is just a little different. Wit-   ing major events in the Toronto
                                             entertainment landscape, Buskerfest
                                             attracts well over half a million spec-
                                             tators a year, and features an eclectic
                                             array of internationally acclaimed
                                             performers from across the globe.

                                             This summer, Buskerfest generated
                                             $140,000 toward epilepsy programs
                                             and services in the Toronto commu-
                                             nity, and garnered 150,000,000++
                                             media impressions, including: articles
                                             in the Star, Sun, Globe & Mail, Na-
                                             tional Post, Metro News, 24 Hours,
                                             Eye Weekly, and NOW Magazine,
                                             and featured extensive coverage on
                                             CTV, City TV, CFTO, CP24, Global,
                                             New VR, CBC, CFRB, MIX 99, EZ
                                             Rock, MOJO, and 680 Radio.




                                                                                         www.epilepsymatters.com
Partners in Education Program


O
The Center for Epilepsy and Seizure Education in British Columbia

        ver the past eight years, the Partners in Education              also vital for educators to have the necessary tools and knowl-
        program has been instrumental in providing edu-                  edge to properly support children in schools and to maximize
        cation to hundreds of teachers in the province of                their mental health and well-being. The program also helps
British Columbia. The program provides interactive, stan-                overcome existing myths and misperceptions of epilepsy.
dardized workshops that increase knowledge and under-
standing of epilepsy in order to support the planning and                Workshop participants receive a comprehensive Resource Kit
management of a child’s education.                                       containing: The Epilepsy “Resource Binder”/workbook and
                                                                         Canadian Epilepsy Alliance education materials including, The
The program incorporates the Canadian Epilepsy Alliance rec-             ABC’s of Seizure Management DVD, brochures, pamphlets,
ommended Best Practice Guidelines with landmark outcomes                 posters, and other teaching tools. Workshop topics include:
proven over seven years. In order to plan and effectively man-           Seizure Recognition, Classification of Seizures, Functions of the
age the education of a child living with epilepsy, the impact of         Brain, Seizure Triggers, Determining Needs and Accessing
epilepsy on learning and behaviour must be understood. It is             Services, Learning Supports and more.


Our Values
I We value people’s right to live with dignity as full participants of   I We believe society has an obligation to be accessible to all its
  their community.                                                         members and opposing of all discrimination.
I We believe it is a person’s right to be informed and to participate    I We respect confidentiality, self-determination and choice.
  meaningfully in their own health management.                           I We believe that strength is found in the ties that bind.
I We believe that health encompasses social and emotional
  well-being.


     Canadian
                                      Log on to www.epilepsymatters.com
     EPILEPSY
             Alliance                 to contact your local agency:
                                      Center for Epilepsy and Seizure Education in BC      Epilepsy Niagara
                                      Cochrane Temiskaming Epilepsy Association            Epilepsy Ontario
                                      Edmonton Epilepsy Association                        Epilepsy Ottawa - Carleton
                                      Épilepsie Grandby and Region                         Epilepsy Saskatoon
                                      Épilepsie Mauricie Centre du Québec                  Epilepsy Simcoe County
                                      Épilepsie Montréal Métropolitain                     Epilepsy Support Centre - London & Area
                                      Epilepsy & Seizure Association of Manitoba           Epilepsy Toronto
                                      Epilepsy Association of Nova Scotia                  Epilepsy Windsor & Essex County
                                      Epilepsy Durham Region                               Epilepsy York Region
       Alliance                       Epilepsy Huron-Perth-Bruce                           Seizure and Brain Injury Centre - Timmins

    canadienne de
                                      Epilepsy Kingston & Area                             Southern Alberta Epilepsy Association




                                      1-866-EPILEPSY
   L’ÉPILEPSIE
                                      Epilepsy Newfoundland & Labrador                     Victoria Epilepsy and Parkinson’s Centre




                                      A cure may be found tomorrow, but someone needs your help today.


        Matters is supported by a generous educational grant from:
 Epilepsy

				
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