GOODBYE TO A GREAT SUPPORTER
Epilepsy Action Australia pays tribute to Tony Greig, longtime ambassador
for epilepsy who for 19 years generously volunteered his time as a Director
on our Board. Tony died of a heart attack on 29th December aged 66.
Tony was 12 when he was diagnosed
with epilepsy after a car accident. He
knew firsthand the pain and
challenges of seizures and in later life
spoke of the discrimination still
surrounding the condition. A former
England cricket captain and famed
Channel Nine cricket commentator,
he used his profile to promote a
better Australia for people with
epilepsy, building understanding and
RUN AND RAISE
FUNDS
Do you know any keen runners who
would like to run City2Surf in
August and support Epilepsy Action
Australia at the same time?
Ask them to join Epilepsy Action Australia's 2013
running team in Sydney's favourite 14 km run and
make fundraising the focus of their challenge. We
have 10 Gold Charity runners dedicated to raising
over $1,000 each contributing to our 2013 target
of $25,000.
For more information visit
www.epilepsy.org.au/city2surf or call (02)
9856 7067
awareness of the condition. He
launched numerous services for
Epilepsy Action Australia and was the
face of many fundraising and
awareness campaigns.
He offered a hand of friendship to all
living with epilepsy and his insightful
contributions to our Board will be
missed. Our deep condolences go to
Tony’s wife and four children.
THANK YOU
Epilepsy Action Australia would like to take this
opportunity to acknowledge and thank the
generosity of some of our recent supporters:
• Allport Bequest
• Barrier Social Democratic Club
• Campsie RSL Club
• Chester Hill RSL and Bowling Club
• Commercial Club (Albury) Ltd.
• Commonwealth Bank Community Grants
• Dee Why RSL Club
• Dooleys Lidcombe Catholic Club
• Euston Club
• Gaming Community Trust (WA)
• Goulburn Soldiers Club
• Goulburn Workers Sport & Recreation Club
• Hornsby RSL Club
• Illawarra Catholic Club
• James N Kirby Foundation
• Macleay Valley ClubGRANTS Committee
• May and Stanley Smith Charitable Trust
• McCusker Charitable Foundation
• Mosman Returned Servicemen's Club
• North Sydney Leagues Club
• Orange Ex-Services' Club
• Parramatta RSL League
• Pierce Armstrong Foundation
• Ramsgate RSL Club
• Seagulls Club
• The Marian and E.H. Flack Trust
• Tweed Heads Bowls Club
• West Pennant Hills Sports Club
• Wests Ashfield Leagues Club
• ‘yes’ Optus Community Grant
TAKING ACTION
Helping Australians live confidently, despite seizures
VOL 5, 2013
YOU HELPED IMPROVE BEN’S SCHOOL LIFE!
Ben Corney has the reading age of a child five years older. But that isn’t why his teachers began to
notice him in class.
Ben was diagnosed with epilepsy in 2011 and in the watchful, worried days that followed, his parents realised their
son was having absence seizures at school. “His teacher would notice he was writing and suddenly he’d drop his
pencil and go blank,” says Ben’s mum Kelly. “He’d be sitting for ages not doing anything.”
As the Corney family was living in remote Hopetoun, WA, little support was available
for Ben. His teachers had never taught a student with epilepsy before.
“They were nervous,” says Kelly. “They really didn’t know what was going
on.” The fact Ben might need to be given emergency medication for his
very long seizures that endanger his life “was also a big responsibility.”
Thanks to you and Epilepsy Action Australia’s other great donors, Ben’s
teachers have received two presentations via teleconference from one of
our Epilepsy Nurse Educators, training them in general epilepsy
awareness and administering emergency medication.
“It gave them a better understanding and more confidence to deal
with situations that could occur,” explains Kelly. “They were more
understanding of Ben as well, that there was a good reason
for his behaviour.”
Our Epilepsy Nurse Educator also created a Seizure
Management Plan explaining exactly what to do for
Ben’s different seizure types. “Having it in writing
helped them feel more prepared,” says Kelly.
Last December, the Corneys moved to Perth,
closer to the assistance Ben needs, and Kelly
spoke to Epilepsy Action Australia about
finding a supportive school. When the first
one they tried wouldn’t enrol him because
of his epilepsy, “It was heartbreaking … a
big kick,” says Kelly. His new school is
“very positive” about including Ben and
“it really helped having a Seizure
Management Plan already,” she says.
Thank you for supporting children
like Ben Corney.
2013 • BECOME AN ACTION PARTNER
• BRYDEE MEETS ELLIOT BEAR • PURPLE DAY
CONTACT US: GPO Box 9878 IN YOUR CAPITAL CITY • 1300 37 45 37 • www.epilepsy.org.au
PAGE 1
FROM THE CEO
GO PURPLE!
I hope you enjoy this issue of Taking Action and
see from each story just how much difference
your donations are making to people living with
epilepsy.
In 2013, your gifts to Epilepsy Action Australia
have the power to transform even more lives as
we again focus on making services available that
we can deliver remotely. This will mean our
specialist epilepsy support is equally open to
increasing numbers of people who need us, no
matter where they live across Australia.
Perhaps you live in a regional or remote area
and know firsthand the difficulties of managing
a chronic health condition far from good medical
help. Our commitment is to assist those
personally affected by epilepsy, wherever they
live, and to build epilepsy knowledge among
medical and allied health workers within the
wider community. In a country as big as
Australia, technology is the key to doing this
successfully and cost-effectively.
Your faithful commitment to our work through
ongoing donations is the only way we can
sustain and develop services such as community
education now offered via our new Online
Academy – an Australian first. We have also just
launched Smart Clips, weekly messages on our
website from epilepsy experts on topics of
interest, such as epilepsy and memory, or
driving.
So please, continue your fantastic support and
know your contributions this year will help more
people than ever.
Carol Ireland
Chief Executive Officer
Epilepsy Action Australia
PAGE 2
Epilepsy Action Australia is once again embracing Purple Day (26th March).
You can help this global effort to build epilepsy awareness by fundraising for
us – or simply wearing purple on the day to get people talking about epilepsy.
Two of our amazing Purple Day supporters share
their plans for raising awareness and funds for
Epilepsy Action Australia this 26th March. To find
out more about how you could get involved please
visit our website, www.epilepsy.org.au/purpleday.
BRYDEE MEETS ELLIOT BEAR…
Six-year-old Brydee Gray from country Queensland
spent a happy week with Elliot – a cute and cuddly
teddy bear who, with his little sister Elly, travels
Australia visiting children with epilepsy and making
them smile! Brydee’s mum Angela says “he was a
fantastic comforter to her” after a difficult year in 2012
when she was hospitalised five times having seizures
that wouldn’t stop. Brydee slept with Elliot every night
and took him to school with her. Along with showing
Brydee she wasn’t the only one with epilepsy, “I think
he helped all the children become aware that epilepsy
is okay and it’s okay to talk about it and ask that
question,” says Angela. With her mum’s help, Brydee
wrote this report in the ‘bear book’ that accompanies
Elliot and Elly on their journeys:
“On our farm we rear calves. I love helping feed
the little babies their milk. It tickles when they
suck your hands.
When I have a seizure at night, mum and dad
turn on all the outside lights for the ambulance
officers to find their way. It is a 25 minute drive
for help to arrive if they are available to come
straight away.
My week with Elliot has been fantastic. I was so
excited when he arrived at my house. He has
been in the tractor. We took Elliot to the dairy to
milk a cow. On the school bus he even got buckled
in to stay safe.
All of the school kids (and of course, the teachers
too) adored Elliot. He made that many friends he
got a special award from our Principal, “Student
of the Week”, for being a great friend.”
Parents can register for a week’s visit from
Elly or Elliot bear on our website,
www.epilepsy.org.au. Thank you for helping
make this service possible!
Krystal Hutcheon is taking part this Purple
Day 2013 for her four-year-old daughter
Lindsay…
“I first became aware of Purple Day early last year
and quickly organised an Everyday Hero donation
page at www.everydayhero.com.au and had a few
donation boxes put in relatives’ workplaces to raise
funds. This year I’m planning something a bit different
– holding a family fun day at our local play centre!
I participate in Purple Day as my eldest daughter
Lindsay has epilepsy. I really want to raise the
community’s awareness and acceptance of epilepsy
and those who suffer from it. Lindsay will struggle
with epilepsy for her entire life and I’m hoping she
will lead a normal and happy life with acceptance
and understanding from everyone she meets.
For me, it’s really important to help people
understand epilepsy. Lindsay is growing up so
much every day. I can’t be with her all the time, so
if she was to have a seizure in public, I would feel
reassured to know there was someone to help her
when she needed it.
I think everyone could do a bit to help! From making
a donation, selling merchandise or organising a fun
event. It’s easy and every bit counts!”
Greg Norris is doing lots in his community to
help raise funds for Purple Day 2013 –
approaching local shops, libraries and local
councils to jump on board.
“I’ve had epilepsy for many years and felt I wanted
to give back to Epilepsy Action Australia and thank
them for all the great support they have given me
by helping as much as I can for Purple Day 2013.
Epilepsy Action Australia needs as many people
supporting them as possible as there are so many
people that are living with epilepsy and the number is
growing every year. Many of them just don’t want to
admit they have epilepsy. I have found it very
rewarding to contact members of community and find
so many amazing people and organisations willing to
help. It’s pleasing to see local business getting behind
Purple Day, as well as friends and family.
I would urge everyone to get involved and raise
money and awareness for epilepsy on Purple Day –
it's only one day a year but can make a huge
difference to many people’s lives.”
It’s also a great way to give back to those that have
helped my family. Epilepsy Action Australia has
provided us with information and support when
we’ve really needed it and I want them to be able
to continue to support other families like us.
A few ideas of how YOU can raise
awareness for Purple Day:
● donate your Facebook status to us for a
week leading up to 26th March
● encourage your workmates, friends and
family to dress in purple for the day
● put your baking skills to the test and do a
purple cake sale!
● talk about it – raise awareness of
epilepsy over a Purple Day morning tea
PAGE 3
FROM THE CEO
GO PURPLE!
I hope you enjoy this issue of Taking Action and
see from each story just how much difference
your donations are making to people living with
epilepsy.
In 2013, your gifts to Epilepsy Action Australia
have the power to transform even more lives as
we again focus on making services available that
we can deliver remotely. This will mean our
specialist epilepsy support is equally open to
increasing numbers of people who need us, no
matter where they live across Australia.
Perhaps you live in a regional or remote area
and know firsthand the difficulties of managing
a chronic health condition far from good medical
help. Our commitment is to assist those
personally affected by epilepsy, wherever they
live, and to build epilepsy knowledge among
medical and allied health workers within the
wider community. In a country as big as
Australia, technology is the key to doing this
successfully and cost-effectively.
Your faithful commitment to our work through
ongoing donations is the only way we can
sustain and develop services such as community
education now offered via our new Online
Academy – an Australian first. We have also just
launched Smart Clips, weekly messages on our
website from epilepsy experts on topics of
interest, such as epilepsy and memory, or
driving.
So please, continue your fantastic support and
know your contributions this year will help more
people than ever.
Carol Ireland
Chief Executive Officer
Epilepsy Action Australia
PAGE 2
Epilepsy Action Australia is once again embracing Purple Day (26th March).
You can help this global effort to build epilepsy awareness by fundraising for
us – or simply wearing purple on the day to get people talking about epilepsy.
Two of our amazing Purple Day supporters share
their plans for raising awareness and funds for
Epilepsy Action Australia this 26th March. To find
out more about how you could get involved please
visit our website, www.epilepsy.org.au/purpleday.
BRYDEE MEETS ELLIOT BEAR…
Six-year-old Brydee Gray from country Queensland
spent a happy week with Elliot – a cute and cuddly
teddy bear who, with his little sister Elly, travels
Australia visiting children with epilepsy and making
them smile! Brydee’s mum Angela says “he was a
fantastic comforter to her” after a difficult year in 2012
when she was hospitalised five times having seizures
that wouldn’t stop. Brydee slept with Elliot every night
and took him to school with her. Along with showing
Brydee she wasn’t the only one with epilepsy, “I think
he helped all the children become aware that epilepsy
is okay and it’s okay to talk about it and ask that
question,” says Angela. With her mum’s help, Brydee
wrote this report in the ‘bear book’ that accompanies
Elliot and Elly on their journeys:
“On our farm we rear calves. I love helping feed
the little babies their milk. It tickles when they
suck your hands.
When I have a seizure at night, mum and dad
turn on all the outside lights for the ambulance
officers to find their way. It is a 25 minute drive
for help to arrive if they are available to come
straight away.
My week with Elliot has been fantastic. I was so
excited when he arrived at my house. He has
been in the tractor. We took Elliot to the dairy to
milk a cow. On the school bus he even got buckled
in to stay safe.
All of the school kids (and of course, the teachers
too) adored Elliot. He made that many friends he
got a special award from our Principal, “Student
of the Week”, for being a great friend.”
Parents can register for a week’s visit from
Elly or Elliot bear on our website,
www.epilepsy.org.au. Thank you for helping
make this service possible!
Krystal Hutcheon is taking part this Purple
Day 2013 for her four-year-old daughter
Lindsay…
“I first became aware of Purple Day early last year
and quickly organised an Everyday Hero donation
page at www.everydayhero.com.au and had a few
donation boxes put in relatives’ workplaces to raise
funds. This year I’m planning something a bit different
– holding a family fun day at our local play centre!
I participate in Purple Day as my eldest daughter
Lindsay has epilepsy. I really want to raise the
community’s awareness and acceptance of epilepsy
and those who suffer from it. Lindsay will struggle
with epilepsy for her entire life and I’m hoping she
will lead a normal and happy life with acceptance
and understanding from everyone she meets.
For me, it’s really important to help people
understand epilepsy. Lindsay is growing up so
much every day. I can’t be with her all the time, so
if she was to have a seizure in public, I would feel
reassured to know there was someone to help her
when she needed it.
I think everyone could do a bit to help! From making
a donation, selling merchandise or organising a fun
event. It’s easy and every bit counts!”
Greg Norris is doing lots in his community to
help raise funds for Purple Day 2013 –
approaching local shops, libraries and local
councils to jump on board.
“I’ve had epilepsy for many years and felt I wanted
to give back to Epilepsy Action Australia and thank
them for all the great support they have given me
by helping as much as I can for Purple Day 2013.
Epilepsy Action Australia needs as many people
supporting them as possible as there are so many
people that are living with epilepsy and the number is
growing every year. Many of them just don’t want to
admit they have epilepsy. I have found it very
rewarding to contact members of community and find
so many amazing people and organisations willing to
help. It’s pleasing to see local business getting behind
Purple Day, as well as friends and family.
I would urge everyone to get involved and raise
money and awareness for epilepsy on Purple Day –
it's only one day a year but can make a huge
difference to many people’s lives.”
It’s also a great way to give back to those that have
helped my family. Epilepsy Action Australia has
provided us with information and support when
we’ve really needed it and I want them to be able
to continue to support other families like us.
A few ideas of how YOU can raise
awareness for Purple Day:
● donate your Facebook status to us for a
week leading up to 26th March
● encourage your workmates, friends and
family to dress in purple for the day
● put your baking skills to the test and do a
purple cake sale!
● talk about it – raise awareness of
epilepsy over a Purple Day morning tea
PAGE 3
GOODBYE TO A GREAT SUPPORTER
Epilepsy Action Australia pays tribute to Tony Greig, longtime ambassador
for epilepsy who for 19 years generously volunteered his time as a Director
on our Board. Tony died of a heart attack on 29th December aged 66.
Tony was 12 when he was diagnosed
with epilepsy after a car accident. He
knew firsthand the pain and
challenges of seizures and in later life
spoke of the discrimination still
surrounding the condition. A former
England cricket captain and famed
Channel Nine cricket commentator,
he used his profile to promote a
better Australia for people with
epilepsy, building understanding and
RUN AND RAISE
FUNDS
Do you know any keen runners who
would like to run City2Surf in
August and support Epilepsy Action
Australia at the same time?
Ask them to join Epilepsy Action Australia's 2013
running team in Sydney's favourite 14 km run and
make fundraising the focus of their challenge. We
have 10 Gold Charity runners dedicated to raising
over $1,000 each contributing to our 2013 target
of $25,000.
For more information visit
www.epilepsy.org.au/city2surf or call (02)
9856 7067
awareness of the condition. He
launched numerous services for
Epilepsy Action Australia and was the
face of many fundraising and
awareness campaigns.
He offered a hand of friendship to all
living with epilepsy and his insightful
contributions to our Board will be
missed. Our deep condolences go to
Tony’s wife and four children.
THANK YOU
Epilepsy Action Australia would like to take this
opportunity to acknowledge and thank the
generosity of some of our recent supporters:
• Allport Bequest
• Barrier Social Democratic Club
• Campsie RSL Club
• Chester Hill RSL and Bowling Club
• Commercial Club (Albury) Ltd.
• Commonwealth Bank Community Grants
• Dee Why RSL Club
• Dooleys Lidcombe Catholic Club
• Euston Club
• Gaming Community Trust (WA)
• Goulburn Soldiers Club
• Goulburn Workers Sport & Recreation Club
• Hornsby RSL Club
• Illawarra Catholic Club
• James N Kirby Foundation
• Macleay Valley ClubGRANTS Committee
• May and Stanley Smith Charitable Trust
• McCusker Charitable Foundation
• Mosman Returned Servicemen's Club
• North Sydney Leagues Club
• Orange Ex-Services' Club
• Parramatta RSL League
• Pierce Armstrong Foundation
• Ramsgate RSL Club
• Seagulls Club
• The Marian and E.H. Flack Trust
• Tweed Heads Bowls Club
• West Pennant Hills Sports Club
• Wests Ashfield Leagues Club
• ‘yes’ Optus Community Grant
TAKING ACTION
Helping Australians live confidently, despite seizures
VOL 5, 2013
YOU HELPED IMPROVE BEN’S SCHOOL LIFE!
Ben Corney has the reading age of a child five years older. But that isn’t why his teachers began to
notice him in class.
Ben was diagnosed with epilepsy in 2011 and in the watchful, worried days that followed, his parents realised their
son was having absence seizures at school. “His teacher would notice he was writing and suddenly he’d drop his
pencil and go blank,” says Ben’s mum Kelly. “He’d be sitting for ages not doing anything.”
As the Corney family was living in remote Hopetoun, WA, little support was available
for Ben. His teachers had never taught a student with epilepsy before.
“They were nervous,” says Kelly. “They really didn’t know what was going
on.” The fact Ben might need to be given emergency medication for his
very long seizures that endanger his life “was also a big responsibility.”
Thanks to you and Epilepsy Action Australia’s other great donors, Ben’s
teachers have received two presentations via teleconference from one of
our Epilepsy Nurse Educators, training them in general epilepsy
awareness and administering emergency medication.
“It gave them a better understanding and more confidence to deal
with situations that could occur,” explains Kelly. “They were more
understanding of Ben as well, that there was a good reason
for his behaviour.”
Our Epilepsy Nurse Educator also created a Seizure
Management Plan explaining exactly what to do for
Ben’s different seizure types. “Having it in writing
helped them feel more prepared,” says Kelly.
Last December, the Corneys moved to Perth,
closer to the assistance Ben needs, and Kelly
spoke to Epilepsy Action Australia about
finding a supportive school. When the first
one they tried wouldn’t enrol him because
of his epilepsy, “It was heartbreaking … a
big kick,” says Kelly. His new school is
“very positive” about including Ben and
“it really helped having a Seizure
Management Plan already,” she says.
Thank you for supporting children
like Ben Corney.
2013 • BECOME AN ACTION PARTNER
• BRYDEE MEETS ELLIOT BEAR • PURPLE DAY
CONTACT US: GPO Box 9878 IN YOUR CAPITAL CITY • 1300 37 45 37 • www.epilepsy.org.au
PAGE 1