Spring 2012
818 Burke Road
Camberwell VIC 3124
phone (03) 9805 9111
email [email protected]
web www.epinet.org.au
REG.NO A0022674D • ABN 75 967 571 784
Riches of a special kind
Tom Riches is only six years of age but it was his initiative in May
2011 to raise money for the Epilepsy Foundation of Victoria. Which
just goes to prove that age makes no difference when it comes
to good ideas for raising funds and awareness of epilepsy.
In this issue
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A gift in a lifetime
Thanks to our charitable trusts
Purple Day wrap up
We’re moving
Raffle winners
Team Tombo for Epilepsy, with young Tom as captain, successfully finished
the Run Melbourne event on Sunday, 15 July, and raised $6,858.20 to support
programs for people with epilepsy. After raising more than $3000 in the 2011
Run Melbourne, Tom confidently predicted that “this year we will raise more than
that”. And that’s exactly what his team did.
With the help of his brother, James, mum Paula and dad Chris,
friends and family from Colac, staff and supporters from
the Foundation, and some good organisation and
training, Team Tombo has more than met its mark.
It will come as no surprise that Tom knows a lot
about epilepsy from personal experience. He was
diagnosed with epilepsy in 2007 when he was two
and a half years of age. His epilepsy wasn’t at first
noticeable in the way most people think of epilepsy
– as tonic clonic or ‘drop’ seizures. As Paula says,
they first felt something was wrong when they
noticed that Tom seemed to be day-dreaming.
“I’d notice that for example he would be sitting on
the bench and then stop whatever he was doing,
and after a few seconds come back to what he
was saying. Then leading up to Christmas
2007, we had a photo of him where his
eyes were rolled back, so we knew
that something wasn’t right,”
says Paula.
When Tom’s ‘daydreaming’ episodes
started becoming more
and more frequent,
Paula and Chris
knew they needed
to understand more
about Tom’s condition.
At the Royal Children’s
Hospital in Melbourne, Tom had
an electroencephalogram (EEG)
which showed that he was experiencing
absence seizures.
Purple Day wrap up…
Absence seizures involve a brief,
sudden lapse of consciousness, and
are more commonly associated with
children. It can appear that the child is
staring into space for a few seconds,
and in some case the eyes will roll
back. While appearing less dramatic
than other types of seizures, absence
seizures can be serious because of
the loss of consciousness, particularly
with more active activities such as
swimming or climbing.
2012 has not been the best year for
Tom. In his second year of school, the
impact of his seizures has become
more obvious than during his preschool years. As with many children
Continued over…
Continued from page 1…
who experience absence seizures, they can find it difficult
to concentrate and learn because they keep missing
things. It often means that children who experience
absence seizures cannot meet the same educational
milestones that the system dictates.
“The main impact for Tom is the extreme tiredness
throughout the day”, says Paula. “And there’s the constant
readjustment of the medication to get it right. One of the
medications was affecting his brain function, and so
it also affects behaviour. He also doesn’t have
a great attention span, and testing has shown
that he has deficiencies in following instructions.
It’s those things that are different”.
Regular trips to the specialist in Melbourne
are an added interruption to school routines.
Thankfully Tom has become more stable, with
visits to the neurologist now every two months.
One of the most practical ways that the
Foundation can support people with epilepsy is
to be there when they most need assistance.
For the Riches family, that time came as Tom’s
education came closer and Paula felt the need
to understand more about Tom’s epilepsy and
how it was affecting him.
Tom also has an epilepsy management plan in place,
which means that any organisation that has contact with
Tom knows exactly what to do should he be affected by
absence seizures. “In January Tom wanted to go to a
cricket camp, and the organisers had no problem with Tom
being involved because they knew what the management
plan was. It was a really good thing.”
Individual efforts by people who want to support the
work of the Epilepsy Foundation play a significant part
in contributing funds that support services
for people living with epilepsy. Whether it is a
team event like Team Tombo for Epilepsy, a
milestone celebration which people mark by
donating to the Foundation in lieu of presents,
participation in the annual Purple Day activities,
a bequest left in a will, or a regular individual
donation, the value of each contribution can
never be underestimated.
The Epilepsy Foundation of Victoria can
best be described as a real community
Six year old Tom
organisation: one that meets the needs of the
shows us what
epilepsy community through the support of the
can be achieved.
community. The effort that any individual makes
enables the Foundation to meet the demand
for its services for families and individuals. So every
contribution – small or large – makes a big difference.
“Our first contact with the Foundation wasn’t for quite a
while after Tom was diagnosed,” says Paula. “Initially, after
Tom’s dad, Chris, adds another insight into the value of
the diagnosis, it’s all about getting the medication right.
the Team Tombo for Epilepsy fundraising effort. “It starts
But as he was approaching kinder, we just felt we needed
the conversation about epilepsy. So many people have
more information. So on one of our visits to the Royal
said to me that they know someone who has epilepsy.
Children’s Hospital, we decided to call into the Foundation.
It seems to be so common, so many people have it, but
it’s still hidden.”
“The most valuable thing about our contact with the
Foundation is that you can talk on the telephone or call into
Young Tom Riches – at six years of age – has shown us
the office, and you don’t feel stupid. There’s just someone at
what can be achieved. Rather than focusing on his own
the end of the line who can give you some advice or another
needs, Tom wanted to do something for those needing
perspective. You just want to do the right thing for your child, more help than him. It’s a shining example to us all to ask
and knowing you’re on the right track is very reassuring.”
what we too could be doing.
Generous help from charitable trusts
Each year the Epilepsy Foundation seeks help from the many
charitable trusts in Victoria. They provide key support by
making funds available for particular projects. Their support
is invaluable and we would like to acknowledge the following
trusts who have helped the Foundation this year.
• Aged Person Welfare Foundation – $20,000. When added to
an existing $25,000 donation from Helen McPherson Trust,
this contribution will enable the development of an aged care
education and training package.
• The Freemasons Public Charitable Foundation – $4,000 for
the Family Respite Camp.
• Give Where You Live $5,000 and the Marian & E.H. Flack Trust
$7,500 – for The Women’s Epilepsy Network.
Our sincere thanks go to these charitable trusts for their support
of the Foundation and Victorians with epilepsy.
Joe Hextall, Group Development Co-ordinator receives
cheque from Dr John Maynard from the Freemasons
Public Charitable Foundation
thanks for your support
A gift in a lifetime
A book could easily be written
about the amazing life of
Elaine Fewster.
Elaine came to Australia in 1977 with
her then husband, expecting that
after a few years they would return
to England where she would pick up
her career as an income tax advisor
It would chart the life of a woman
specialising in tax law. But they
who experienced her first seizure as
remained in Australia, and Elaine’s
a sixteen year old in England, and
career was to go from strength to
has had a stellar career as a business
strength in her adopted country. She
woman in the financial and investment
recounts with great hilarity seeing
sectors in Australia, through some
employment agencies who completely
of the most testing times for the
overlooked her qualifications and
finance industry.
experience in the UK, and enquired
Side-by-side with her career has been
instead if she could do shorthand and
her strong commitment to productive
typing! But as Elaine says: “This was
and positive partnerships between
1977, and it still wasn’t commonplace
charities and commercial
for women to be in the
organisations, and the
type of positions I was
giving of her time and
aiming for.”
“We have to look
expertise to mentor and
at the bright side
But alongside the career
that comes out
support other people to
achievements, business
of adversity: the
achieve their goals.
initiatives and often
wonderful people
It comes as no surprise
you meet, and
extreme stress associated
then, that the altruistic
the way you can
with that career, Elaine
help others.”
nature of Elaine has been
was dealing with severe
carefully considering
seizures and the aftermath
while she is still alive, how
of tonic clonic seizures.
best she can support the
“I knew what was involved in me
Epilepsy Foundation, people living
having a seizure, and that it would
with epilepsy and their families.
probably mean the embarrassment of
loss of bowel and bladder control. So
“I have a beautiful property that I love
living in, but no dependants. So I have who would have taken me on knowing
they might face that?”
made the decision while I am alive to
leave a gift of property to the Epilepsy
“For a long time, I had managed
Foundation. This is my way of gifting it
to keep my seizures under control.
during my lifetime, then on my death,
I also had the warning of an aura –
the Foundation will have the option of
almost like an electrical buzz – which
using that property or realising on it,
would give me five to ten minutes to
as they see fit.”
politely excuse myself and head for
Elaine is a warm, vivacious person
with an engaging laugh and a wicked
sense of humour. As she says “In all
the difficult and awkward situations I
have faced, recently and in the past,
I find humour helps to get around
them. We have to look at the bright
side that comes out of adversity: the
wonderful people you meet, and the
way you can help others. Because it is
in helping other people, that you feel
better yourself.”
You can read the full
transcript of Elaine Fewster’s
story at www.epinet.org.au
the toilets,” laughs Elaine, “and I also
conveniently had venetian blinds on
the doors and windows of my office!”
Elaine’s stories of how she dealt with
her epilepsy while holding down senior
management positions can be very
amusing. But they are shocking too,
that a woman of such capabilities and
standing had to resort to masking a
common condition. Elaine wonders
if in that respect, things have really
changed today.
Now in her sixties, Elaine reflects
on the two goals she has had in her
life. The first to be an inspiration for
women to achieve in whatever field
they choose. Her second goal was
to encourage people with epilepsy
to do whatever it is they want to do
in their lives. “I want to say to them
that whatever challenge or obstacle
is put in your way, the first thing to
acknowledge is that ‘I will not let the
obstacle determine what I will be in
my life. I will do whatever I can, to get
over, under or around that obstacle’.”
Future generations of people
with epilepsy will have the benefit
of Elaine’s gift to the Epilepsy
Foundation. And together with that
gift, is her own inspirational journey of
success and achievement while living
with epilepsy.
If you would
like to follow
Elaine’s exam
ple and
discuss how
you might
leave a gift o
r bequest to
the Epilepsy
Foundation,
Jeremy Maxw
ell would be
happy to discu
ss it with
you on 9805
9111.
Keep up to date on Facebook
and Twitter
http://www.facebook.
com/EpilepsyFoundation-of-Victoria
http://twitter.com/
epilepsyvic
I
LUV
purple
Purple Day wrap up
With the aim to go bigger and
better for Purple Day in 2012,
our supporters certainly did
not disappoint.
Once again we were blown away by
the incredible support of fundraisers
in the community who did everything
from morning teas to clothes swaps,
even a yoga challenge and everything
in between. This year, thanks to the
Purple Day heros we raised just short
of $50,000 to go towards providing
services for people living with epilepsy.
The Epilepsy Foundation of Victoria
partnered with the Melbourne Storm
to kick off Purple Day at the Storm
vs Roosters match held at AAMI
Stadium. Storm winger and Epilepsy
Foundation ambassador Matt Duffie
hosted Chris, Lachlan and Molly,
school children with epilepsy featured
in our Epilepsy Smart Schools DVD
at training earlier in the week. Chris
and Lachlan were lucky enough to
run through the banner with Captain
Cameron Smith and have their photos
taken with the team. Winner of our
Facebook competition ‘Storm Mascot
for a Day’ Tracey, was lucky enough
to toss the coin, tour the stadium and
bring along 17 of her friends to watch
the game in style up in a corporate
suite. A big thank-you to the many
volunteers who assisted with handing
out ‘I luv purple’ stickers and tin
rattling before the game and helped
raise over $2000 on the day.
At the same time, Lyn Ackers and her
army of volunteers pulled together a
Family Fun day for Epilepsy at Myuna
Farm in Doveton. This was the second
year Lyn had co-ordinated the event
and raised over $3000 for Purple
Day this year. With farm animals, face
painting and pony rides it certainly
was an exciting purple event with
activities on offer to involve everyone in
the family. A special thank-you to the
Gaunt Family who also held an event
raising a massive $3000.
We had 76 people fundraising online
raising over $15,000 through Everyday
Hero alone and just short of 300
boxes of Purple Day merchandise
spread throughout the Victorian
community. We would like to thank
all the people who sold merchandise,
wore purple, volunteered and helped
spread the epilepsy message through
Purple Day.
We are
moving,
help us
celebrate
Our new office at 587 Canterbury Road, Surrey Hills
IT HAS BEEN a long time coming…
we have sold our Camberwell home
and we are moving to our new home
at 587 Canterbury Road Surrey
Hills. In 2006, faced with mounting
maintenance costs and a need for a
better working environment, our Board
initiated a property review.
The aim was to harness the inherent
value of what is a wonderful site and to
build a better home for Victorians living
with epilepsy. A discussion document
was circulated and we took advice
from a number of parties, including
developers, architects and clients. The
suggestions we received came down
to four options:
1. Do nothing.
2. Redevelop the site ourselves.
3. Sell to a developer and have a
home built for us as part of the
redevelopment.
4. Sell and purchase a new home that
best suited our needs.
Much time was given to discussing the
options and to how they honoured the
commitment of the families who set
up the Epilepsy Foundation.
The Epilepsy Foundation was set up as
the Victorian Bureau for Epilepsy in May
1964 after the demise of The Talbot
Colony for Epileptics (now Monash
University). The families involved
believed that the medical profession
and the state government had been
instrumental in their exclusion from the
new Royal Talbot facility at Kew.
One of the key tenets of the new
organisation in 1964 was that funds
would be raised so that a new
permanent home could be purchased.
Once achieved, the Epilepsy
Foundation would then exist so that
Victorians living with epilepsy would
always have a home, no matter what.
Camberwell became that home. The
foundation stone was laid in May 1974
and the building opened in 1975.
With a lack of any funds to redevelop,
the boom in residential prices meant
the best option was to sell and
purchase a dedicated commercial
building that could be our home
for the next 30 plus years.
818 Burke Road Camberwell has been
our home for 37 years; it represents a
great commitment from thousands of
people – in volunteer hours, donated
funds and support to people living with
epilepsy. We invite everyone, no matter
how small or large your involvement
has been, to join us on Sunday 2nd
December, as we say farewell to
our current home, celebrate all our
achievements here and look forward
to our future.
For more details contact Emma Moore
Tel: (03) 9805 9111
Email: [email protected]
Our office at 818 Burke Road (photo circa 2006)
I want to help people living with epilepsy
I WOULD LIKE TO MAKE A DONATION OF $ ________________
Please find my cheque/money order enclosed
Please debit my
Visa
Mastercard
American Express
Diners
Expiry date _______ /_______
Name on card
Signature
Title
First name
Surname
Address
Postcode
@
Email (for future communications)
Phone (
)
Please send me information about
Epilepsy Champions Club
Making a bequest in my Will
Epilepsy education/training for schools and workplaces
Please send me ______ copies of the Seizure First Aid guide to give to my family and friends
Epilepsy Foundation of Victoria Inc. • Reply Paid 69422 Camberwell Victoria 3124 • www.epinet.org.au
2012 Calendar of events
If you are interested in attending any of these activities, or would like more
information please call the Epilepsy Foundation on (03) 9805 9111 or email:
[email protected]
SEPTEMBER
16
Sun
10am–4pm
Ride4Epilepsy – Calder Park
19
Wed
12pm–2pm
Epilepsy Information Session
13
Sat
2pm–4pm
Epilepsy Specialist Series
Epilepsy Surgery Information Session
With Prof Mark Cook & Dr Catherine Meade
21
Sun
12
Mon
6pm–9.30pm
Annual Dinner
19
Mon
6pm–6.30pm
Annual General Meeting
21
Wed
7pm–9pm
Epilepsy Information Session
2
Sun
12 noon–4pm
Farewell to Camberwell
5
Wed
11am– 12 noon
International Volunteers Day Morning Tea
OCTOBER
NOVEMBER
DECEMBER
10am–4pm
Thank you
to the sponsors of the
2012 Ride4Epilepsy:
Epilepsy Specialist Series
Children and Epilepsy
With Prof Ingrid Scheffer and Dr Silvana Micallef
Thank you for your support
Again we say, ‘thank you’ to all our donors
who so generously supported our appeals
over the last twelve months. Through these
income raising efforts, the funds raised help
us provide many of our crucial programs for
families and individuals.
We are only too aware of the many financial
demands on household budgets, and we
feel very privileged to have so many donors
who support people with epilepsy. One of our
challenges is to find the funds to continue
our programs and to respond to the everincreasing need for our services.
So your support for this spring appeal is even
more important. Every dollar truly makes a
difference. As you have done in the past, we
hope you may have the capacity to continue
giving as much as you can.
Latest raffle winners
THANK YOU to all those wonderful people who support our raffles. The funds
raised by purchasing tickets make a real difference to the work of the Epilepsy
Foundation of Victoria.
Raffles are just one of the ways we raise funds to keep our programs and
services operating at such a high standard. We appreciate the loyalty of our
buyers who continue to support each raffle, knowing their contribution to our
work is so important.
Congratulations to our lucky winners of Raffle Numbers 63 and 64:
•Raffle 63 winner – Mona Daniel ($30,000 Coles Myer Gift Cards)
•Raffle 64 winner – Nola Van Klaveren ($30,000 Coles Myer Gift Cards)
If you too would like to be in the ‘luck of the draw’, you can
purchase raffle tickets in the next raffle draw through our website
www.epinet.org.au or by telephone (03) 9805 9111.