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Patrons and Ambassadors

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Our Patrons and Ambassadors

Epilepsy Action Australia is fortunate to have the support of the following generous and respected individuals who dedicate their time, energy and passion to assist us in raising awareness about epilepsy. Many of the following ambassadors and patrons either have epilepsy or have had a family member with the disease, and we are sincerely grateful for their involvement.

Patrons

Peter FitzSimons AM

Author, journalist and former Wallaby; family impacted by epilepsy

Former Wallaby and respected author, Peter FitzSimons felt the enduring impact of epilepsy on his family as he was growing up. Before Peter was born, his parents lost an infant as a result of epilepsy.

‘Epilepsy can impact on all areas of a person’s life, from family to employment and dealing with prejudice…Epilepsy Action Australia does incredible work to support people with epilepsy, their families and community, and professionals.’

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In addition to his role as an EAA ambassador, Peter is a well respected newspaper columnist; television presenter on Fox Sports; and author of 18 best-selling books including biographies on Wallaby captain John Eales, and war heroine Nancy Wake. In 2001 and 2004 he was Australia’s biggest selling non-fiction author. He is married to Today Show co-host Lisa Wilkinson and they have three children. Peter has been appointed a Member of the Order of Australia ‘for service to literature as a biographer, sports journalist and commentator, and to the community through contributions to conservation, disability care, social welfare and sporting organisations’.

Janet Holmes à Court AC

Successful businesswoman and philanthropist

Janet Holmes à Court AC is a highly successful businesswoman, philanthropist and Chairman of the John Holland Group, one of Australia’s leading construction and engineering companies; the West Australian Symphony Orchestra; the Australian Children’s Television Foundation; and the Urban Design Centre of WA. She has won numerous awards recognising her contribution to the community and to business, including a Companion of the Order of Australia.

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Janet is also a Board Director of Vision 2020 Australia and a Board Member of the Rio Tinto WA Future Fund; the Australian National Academy of Music (ANAM); the Australian Chamber Orchestra (ACO); the Australian Major Performing Arts Group (AMPAG); and Chamber of Arts and Culture WA. She is a science graduate from the University of Western Australia and taught science for a number of years before working more closely with family business matters.

 

Ambassadors

Catherine Alcorn

Vocalist, Actor and Producer

Catherine is a multi-award-winning artist, renowned for her powerhouse vocals and razor-sharp wit.

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Catherine Alcorn is one of Australia’s most loved entertainers, adored by audiences for her killer voice and wicked sense of humour. In 2018 Catherine made her triumphant USA and Sydney Opera House debut in her most famous role as The Divine Miss Bette, her smash hit show, channelling Bette Midler, winning her the Best Cabaret Production in the 2018 Broadway World Awards.

Catherine provided the entertainment and acted as EMCEE for Epilepsy Action’s Purple Day event in 2021 and is committed to making 2022 even bigger!

Erin Oudshoorn

Erin is a wife, mother, inspirational woman, and Medical Cannabis advocate

Along with husband Dave and gorgeous daughter Luella, they are championing EAA’s newest initiative “CanGuide”, a crucial new service to provide information and guidance around medical cannabis to Australians.

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In December 2019 at just 11 weeks old, Luella Oudshoorn was diagnosed with Infantile Spasms or West Syndrome, a rare and disabling seizure disorder in infants, usually with an onset around six months of age. Its estimated approx. 2500-3000 children are diagnosed globally each year. At Luella’s worst she was having 250+ spasms a day. Devastatingly, her spasms are deemed ‘drug resistant’, having failed close to fifteen anti-epileptic drugs (AED’s), and therefore she was unable to obtain seizure control.

Upon introducing Cannabidiol Oil in unison with steroid treatment and one AED, Luella’s spasms have been reduced to thirty a day. Although 30 is still too many, Luella has taken it upon herself to rewrite her own play book and make mammoth improvements that doctors said would be near impossible.

Erin and Dave have formed a NFP called “Lulu Love Project”, which gives a deeper insight into West Syndrome and Luella’s journey. The family want to give something back for research and clinical support in the world of Medicinal Cannabis treatments which is a big part of their own journey. They also want to ensure that parents who ever find themselves in the same situation know where to turn to for support, guidance, and education.

(In 2021 Erin and Dave ran City2Surf to fundraise for Epilepsy Action, raising over $64,000 in just 2 weeks! This enables the development of the CanGuide website.)

Luke Eisenhuth

Developed Landau Kleffner Syndrome (a rare form of Epilepsy)

From the beginning, Luke was marred by a serious and very rare form of Epilepsy called Landau Kleffner Syndrome. With only 200 people ever known to have the disorder, Luke was the 7th diagnosis, and the first to instantly lose his ability to speak – and miraculously speak again. The condition affected all spheres of his cognitive, emotional and social development. With the indication he would never speak again, attend mainstream schooling, play sport or sustain a ‘normal’ healthy life – he went on to achieve the opposite. His life has been testing to say the least.

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Luke has managed to create a happy, healthy and financially successful life within education, business and investing. He represented NSW in several sports, played professional Rugby League and attained University qualifications now being regarded as one of the most respected school educators in the system today. Luke has taken his skills and futurist view to improving some of the biggest concerns in education and the world today.

Mark Geyer OAM

Rugby League Legend and Father of two daughters with epilepsy

A committed epilepsy awareness ambassador, footie legend Mark Geyer has felt the personal distress of having two of his beautiful daughters — Montanna aged 21 and 18-year-old Kennedi —diagnosed with juvenile myoclonic epilepsy. Mark has openly shared his story through the media to help raise awareness and spread the important message that there is help available to those living with epilepsy.

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Mark is a former Penrith second row forward, and a state and national representative player. Since retiring from the sport in 2000, he has made a name for himself in the media including becoming part of the Triple M on-air team and as a regular panellist on a number of NRL television shows on free-to-air and Fox Sports. In 2000, Mark was awarded the Australian Sports Medal for his contribution to Australia’s international standing in rugby league. In 2013 he received an Order Of Australia medal for ‘service to the sport of Rugby League football, and to the community through a range of charitable organisations’. Mark and his wife Meagan have five children.

Jyotsana Gill

Triathlete; first diagnosed with epilepsy at age 15

Jyotsana Gill is a triathlon veteran who has competed at an elite level for the last twelve years. She has also lived with epilepsy since she was first diagnosed at the age of 15. While she has had some challenges dealing with the demands of the ‘triathlete’ lifestyle and her condition, her epilepsy is currently well controlled with medication.

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Jyotsana describes herself as motivated and determined, consistently striving towards goals in her life not only as an athlete, but also in her previous work as an interior architect. In 2016, she decided to follow another goal and is currently studying for a Bachelor of Science specialising in osteopathic medicine at Victoria University. Over the years Jyotsana has competed in triathlon and ironman events, and in 2014 was selected to represent Australia at the ITU World Championship Long Course Triathlon in Weihai, China. Jyotsana has recently embarked on some overseas cycling trips to Europe, New Zealand, Mauritius and Vietnam, where she’s travelled solo with just a backpack on her back. Whilst juggling university with a pretty strict training regime, Jyotsana enjoys squeezing in time for family and friends, and some of Melbourne’s finest art, design and food!

Lachlan (Lachy) Gillespie

Purple Wiggle; has a brother and niece affected by epilepsy

Not only does he wear the colour purple in The Wiggles, Lachy also has lived in a family with epilepsy his whole life. Lachy’s brother Cameron, has lived with epilepsy since birth and Cameron and his wife Kelly have had a beautiful daughter Charlotte who has Dravet Syndrome.

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Lachy is thrilled to be an ambassador for Epilepsy Australia.

Not only does he wear the colour purple in The Wiggles, Lachy also has lived in a family with epilepsy his whole life. Lachy’s brother Cameron, has lived with epilepsy since birth and Cameron and his wife Kelly have had a beautiful daughter Charlotte who has Dravet Syndrome. Charlotte loves music and has made a very special connection with The Wiggles colour and music, especially the purple one. ????

Having toured with The Wiggles since 2013 and performing hundreds of shows a year to families all over the world, Lachy takes enormous pride in bringing joy to children and their parents, carers and guardians through entertaining and educational music, dance and colour. He looks forward to working with families living with Epilepsy.

Watch Lachy’s Epilepsy Action Australia video here

Malinda Hayward

Passionate Yoga Instructor; diagnosed with epilepsy

Malinda is a dedicated student of Yoga with a passion for inspiring others to realise their true potential. After years of battling illnesses such as epilepsy, depression, anxiety and ulcerative colitis, she stepped into a Yoga studio and found a new way of life.

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Malinda strives to educate her students via Pranayama (breathwork), Asana (postures) and Meditation with a strong focus on Philosophy, to help them live a happier and healthier life.

Having a background in the Performing Arts, Malinda uses her experience with voice and movement to guide her students into a space where their mind and body feels safe, nourished and present.

Shelby Kennedy

Life Coach; first diagnosed with epilepsy at age 11

Shelby Kennedy, founder and director of The Mindset Movement is a Master Practitioner of Life Coaching and an Associate Member of the International Coach Guild (ICG). She has also lived with epilepsy since the age of 11 when she had absence seizures.

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At 16, she began having generalised seizures after suffering a blow to the head while playing basketball. Now 27, she has been seizure-free for 11 years. Shelby is passionate about Mental Health and Wellbeing and having a positive impact on Mental Health in today’s society. She is also a Certified Practitioner of Neuro-Linguistic Programming, an Accredited Extended DISC Consultant and Trainer, and a Mindset & Self Leadership Specialist who coaches and mentors individual clients and teams through 1:1 Coaching, Team Training Seminars and Workshops.

Caitlin McOmish

Neuroscientist; developed epilepsy as a baby

Caitlin developed epilepsy as a baby, having up to 30 seizures a day, but with her parents support and her own determination she overcame the odds and is now a promising neuroscientist.

‘Epilepsy has given me an opportunity to relate to people I otherwise may not cross paths with. I’m also passionate about improving public awareness of mental health and, of course, understanding how the brain works! I like straying from people’s presumptions of who I am “supposed to be”.’

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She has received many awards including from the American College of Neuropsychopharmacology, the Society for Neuroscience, and the Australasian Neuroscience Society, as well as holding a NARSAD Young Investigator award. In 2015 Caitlin joined the New York Academy of Sciences as a Program Manager for the Life Sciences Discussion Groups and is still employed there today. Caitlin is an advocate of Epilepsy Action Australia and an ambassador for people living with epilepsy. She has contributed directly to EAA as a Director of its Board from March 2008 until October 2011 and is currently our representative and ambassador in New York.

Jayne Meyer Tucker

PhD; founder of a cause related business - JMTinc

Jayne was previously CEO of Good Beginnings Australia, leading one of Australia’s recent mergers between a national and international charity. Jayne has held the champion role of a randomised control trial and social impact evaluation on social inclusion and the role of volunteers.

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She is on the Board of The Royal Society of Arts Oceania, Australian Transformation Association and NSW Nursing and Midwifery Council. Her PhD, Decision making at the local level – the missing link – has recently being socialised in an ebook manifesto ‘Balance Point – making better decisions during times of uncertainty’.

Mia Oatley

Archibald Prize finalist; first diagnosed with epilepsy at age 15

Mia is a Sydney artist best known for her bold and colourful works on canvas. Mia was diagnosed with focal epilepsy at the age of 15 and has been living with her condition for the past 24 years whilst travelling the world, making lots of art and spending time with her young daughter.

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Mia has been a finalist in the Archibald Prize, Mossman Prize, Portia Geach, Waverley Art Prize, and Salon Des Refuses. Her work has been exhibited and collected enthusiastically Australia-wide and internationally. She hopes as an Epilepsy Action Australia ambassador to bring about more awareness and break down some of the existing stigmas.

Jade Prosser

Director of Jade Pro Media; first diagnosed with epilepsy at age 9

Jade Prosser, director of Jade Pro Media, specialises in events and communications. She loves bringing people together and is passionate about brand storytelling.

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Jade was diagnosed with Epilepsy at the age of 9 and has been seizure-free for the last 11 years. Up until recently, Jade hid her condition due to fear of the Epilepsy stigma.

“I’ve decided that my Epilepsy didn’t need to be lonely anymore and that speaking about it makes me a stronger person.  Since opening up about my condition, many positive things have happened. For the first time in my life, I have connected with other people who have Epilepsy. There is such a power in that.

I have also been properly diagnosed and learnt more about my condition. Recently I hosted a Run for Epilepsy which fundraised over $13,813 for EAA! I want to be part of raising awareness and breaking the stigma so that people know it’s okay to talk about.”

Paul Wade

Former Socceroo Captain; first diagnosed with epilepsy at the age 32

Paul Wade remembers well his first seizure at the age of 32 in Buenos Aires, 1993. As the captain of Australia’s Socceroos, he was just about to hit the field to mark lengendary player Maradona in a World-Cup qualifying match when he collapsed in front of the team’s physio.

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Paul hid his epilepsy for years as he moved on to work as a soccer commentator. But his secret was revealed in the most public way possible – he had a seizure while broadcasting a live interview in 2001. Shortly after he underwent brain surgery to stop the seizures. The invasive treatment involved removing a piece of Paul’s brain the size of two matchboxes. Since the successful operation, he hasn’t had a seizure, although his short-term memory has been affected. Paul who now works as a motivational speaker and sports commentator, credits Epilepsy Action Australia with providing invaluable support through his ordeal. He takes every opportunity to raise the profile of epilepsy and our organisation.

Alex Wadelton

Author, Marketing Guru and father of a daughter with epilepsy

Alex Wadelton likes making good ideas for good people. It is what he has been doing for about twenty years.

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He has spearheaded a campaign to create a statue of the most important racial discrimination moment in Australian sporting history – the time indigenous AFL player Nicky Winmar stood up to racist abuse, pointed at the colour of his skin and declared, “I’m black, and I’m proud!”

He has fought back against Australian supermarkets and their short-term plastic promotions with the Future Landfill campaign, which saw Woolworths ‘Lion King Ooshies’ campaign put firmly in the crosshairs, and led to them creating an environmentally promotion in its place.

Alex’s book, The Right-brain Workout (co-authored with advertising and business guru Russel Howcroft) was a best seller for Penguin Random House in 2019.
He has also created advertising campaigns that have run all around the world, raised hundreds of thousands of dollars for a range of charities.

Alex is also the father of the wonderful Lila, who was diagnosed with Epilepsy at the age of 6. Since that time Alex, has been a vocal and proactive supporter of Epilepsy Action Australia and continues to do all he can to raise much needed funds for epilepsy research and support.

Alex firmly believes we all have the ability to change the world. You just have to do it!

Our Funding Supporters

Epilepsy Action Australia would like to thank the following trusts, foundations, business and Government departments for their funding support in assisting us with our ongoing mission to optimise life outcomes for people with epilepsy.

 

Australian Government Department of Health: Provided funds to establish the Epilepsy Nurse Line, a phone and email service to support people living with epilepsy and their families.

 

NSW Health – Sydney West Area Health Service– Under its Non Government Organisation Grant Program, NSW Health – Sydney West Health Service provides funding to support our community-based health education services delivered by our epilepsy specialist nurses.

 

 

The Stan Perron Charitable Foundation is generously supporting EAA’s Strong Foundations Program – an innovative, patient-centered program for children with epilepsy and their families in WA.

Strong Foundations is an intensive and lifesaving support service for children with epilepsy and their families. The service leads to improved learning and independence outcomes for children with epilepsy.

 

With support from James N. Kirby Foundation, EAA is delivering a Youth Peer Support Program – Connecting Young Australians with Epilepsy. This youth-driven initiative will give young people with epilepsy a voice while also tackling common issues of isolation, discrimination, and anxiety. The program will provide a facilitated social media support group which will be run by our Youth Ambassadors with the support of a Registered Nurse.

 

With the kind support of the NSW Government, Department of Communities and Justice, EAA is able to expand on it’s Youth Connect Program, by providing a peer support service and vodcast series. These youth-initiatives give young people with epilepsy a voice while also tackling common issues of isolation, discrimination, and anxiety. The vodcasts will also help to reduce the stigma about epilepsy in the community.

 

LivaNova is a global medical technology company built on decades of experience and a relentless commitment to patients. They focus is transforming lives with products and therapies for the head and heart, including Vagus Nerve Stimulation (VNS) for people with medication resistant epilepsy. LivaNova have very generously supported Epilepsy Action Australia with many events and projects including the Ask an Expert series.

 

UCB Australia is an affiliate of UCB – a global biopharmaceutical company with a focus on neurology and immunology. The company was instrumental in supporting the launch of the ‘MyEpilepsyKey’ online information and resource hub. UCB has also supported Medikidz, our new digital comic to help children aged between 8-12 years understand epilepsy. UCB Australia sees great alignment with the vision and values of Epilepsy Action Australia as they both strive for positive impact through innovation and collaboration.

 

Vuly pushes the limits of design and engineering to create the world’s most incredible outdoor play products. Recognized around the world for setting the benchmark in trampoline and swing set excellence, Vuly are committed to innovation, quality, and safety. Their mission is to contribute to the world by making healthy play both safe and fun – encouraging a better lifestyle for humanity.

Vuly is a sponsor of Epilepsy Action Australia’s Purple Day and have generously donated Vuly play equipment.

To explore Vuly’s incredible outdoor play products visit
Kids mountain bikes  https://www.vulyplay.com/en-AU/bikes/kids/mountain
Swing sets: https://www.vulyplay.com/en-AU/swingsets

For further information about our 2022 Purple Day Sponsor, visit vulyplay.com

Collier Charitable Fund

Being a long-time supporter of Epilepsy Action Australia, Collier Charitable Fund has provided very generous financial support for a range of vital programs and services and this year have provided funding for an early intervention program targeting families with children diagnosed with epilepsy.

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Our Partnerships

Epilepsy Action Australia wishes to thank the following partners for helping us with our ongoing mission to optimise life outcomes for people with epilepsy.

 

Epilepsy Action Australia partners with HealthMatch to assist people living with epilepsy to gain quick and easy access to clinical trials from a network of care teams around the world and to reduce the time you spend searching. HealthMatch is a clinical trial matching platform, designed to make accessing clinical trials much easier for patients.

 

memo logo1 blue_edited.pngEpilepsy Action Australia partners with MEMO Memory Rehabilitation Pty Ltd.  Their initial product, MEMO (Making Everyday Memory Optimal) is an online memory rehabilitation program well suited to adults with epilepsy.  The program provides a dedicated video-conferencing platform for clinician-led, weekly group-based interactions, pre-session educational videos as well as strategy centred exercises with feedback to enhance improvements in everyday memory.

Through collaboration with patients and clinicians, MEMO’s aim is to redesign what rehabilitation looks like and use technology to bring memory rehabilitation into the digital age.

 

APM Logo

APM (Advanced Personnel Management) is a leading Australian-owned international human services organisation delivering employment, injury management/vocational rehabilitation, assessment, allied health intervention and community care (aged care and disability care) services. APM delivers these services from 450-plus locations across Australia, in New Zealand and the UK, assisting more than 80,000 people each year.

Epilepsy Action Australia partners with APM to enable people with epilepsy to have support and the best possible outcome when looking for employment options.

 

Epilepsy Action Australia partners with healthdirect , a federal government funded organisation that provides easy access to trusted, quality health information and advice online and over the phone (1800 022 222). The service is available 24 hours a day, 7 days a week to help you make informed choices anywhere, anytime.

 

Epilepsy Action Australia partners with Livewire to provide a free, safe and supportive online community for young people, aged over 10 & under 21, living with a serious illness, chronic health condition or disability. This partnership is mutually beneficial and focused on extending services and reach of both partners.

 

In 2007, our partnership with The George Institute for Global Health lead to the Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC) – a major research project exploring the incidence, psychosocial impact and household economic burden of epilepsy in a large population.

Wild Panther Fitness (WPF), an online community for anything and everything fitness, has selected Epilepsy Action Australia as their charity of choice. Directors of WPF Mark Geyer (also one of our generous ambassadors) and Scott Lewis are dedicated to the cause, and aim to raise much needed funds and awareness of epilepsy.

 

Partner With Us

Epilepsy Action Australia relies on community and corporate support to assist us in our work of supporting people with epilepsy and those who care for them. If you are interested in exploring ways your organisation can partner with us to further expand and enhance our services, please get in touch with us now.

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