Helen Whitehead- A Legacy of Care - Epilepsy Queensland - share your story

Helen Whitehead- A Legacy of Care

To say Helen Whitehead has lived the mission of Epilepsy Queensland would be an understatement. In the 28 years she has spent as CEO of Epilepsy Queensland, she has helped to optimise the lives of Queenslanders living with epilepsy and bring epilepsy out of the shadows. ⁠It is with sadness that we advise Helen has resigned from Epilepsy Queensland.⁠

Establishing a culture of care

Helen has been a major part of achieving this mission forged 50 years ago by a group of parents, people living with epilepsy, health professionals, and educators. In that time the lives of the hundreds of thousands of people have touched been touched by our services.

Helen is known for the signature splash of purple in her hair in line with the awareness colour for epilepsy. She will, however, also be remembered for cultivating a culture of care and support among team members, volunteers, and the members of our epilepsy community. A community where people matter and staff support and get to know people and their needs as individuals.

Building relationships

From the outset, Helen set about raising awareness and understanding of epilepsy, to help reduce stigma and discrimination. The “Shadows of Discrimination” study was the first of its kind in Queensland and clearly demonstrated the impact of misconceptions and stigma on the lives of people with epilepsy. Helen was instrumental in engaging ambassadors for the cause with lived experience of epilepsy themselves or as a family member to share their stories in the media, advertisements, and our publications. In 2009, the team helped to usher in our main awareness campaign as Epilepsy Queensland brought Purple Day to Australia.

Wayne Bennett was the first “celebrity” to step forward and publicly support Epilepsy Queensland’s awareness and fundraising. The Brisbane Broncos became valued partners for many years. Early supporters who were generous in their time and contribution to Epilepsy Queensland included Hugo Weaving, George Gregan, Susie O’Neill, and Pat and Louise Rafter.

Wally Lewis accepted Helen’s invitation to become Patron in 2009, and this heralded a new era for epilepsy in Queensland. Wally Lewis recently said of Helen:

“When you’re first involved with epilepsy and told all about it, you’re not quite sure what path you are going to follow. You need some assistance and precious advice that comes from the people at Epilepsy Queensland. Helen Whitehead is the CEO at Epilepsy Queensland. She ensures they provide wonderful assistance to everybody that requires it. After working with Helen for over 11 years as Patron of Epilepsy Queensland, I have only respected her even more.”


Building a multi-skilled team

As a psychologist and speech pathologist, Helen recognised the profound psychosocial impact of epilepsy. To provide support for people with epilepsy and their families, Helen built a team of professionals with diverse skills including teaching, counselling, nursing, human services, public health, communications, fundraising and the arts. We gained a reputation for consistently punching above our weight as creative projects coordinated by Carol Sugden both empowered people with epilepsy and their families,
as well as raised awareness in the community.

Raising awareness

The “Shadows of Discrimination” study demanded that we become proactive in raising awareness about epilepsy to reduce stigma, and we started this with children, where we could make the greatest lasting difference. With Anne Little, our mascot Little Poss was conceived in 1993 to help remove the stigma of epilepsy amongst children in schools. The books “And Down Went Poss” and “Poss’s School Days” were written to help children understand how to be a good friend to people living with epilepsy. These books and the “Little Poss Show” that visited kindergartens, preschool, and schools, were considered very innovative. In 1994 this was enhanced by the World of Trivia Program in schools to increase awareness and raise funds for the program. It was through World of Trivia that we met one of our longest supporters, Andrew Barnes as a student, who remains with as a board member and key advocate today.

Helen also brought Epilepsy Queensland into the digital age with our first website in 1998 giving people ready access to evidence-based information in their own homes. In 1999 our Little Poss website won the Cable & Wireless Award for best not-for-profit website for children in the world.



Advocating for government support

Helen has been a strong advocate to the government for support for people living with epilepsy and funding for EQI so we could deliver our services. Along with staff and board members, she has developed a strong reputation for EQI by networking with healthcare workers, neurologists, educators, government departments, and researchers for the best results for people living with epilepsy. While seminars and workshops have always been one of our activities, the “Thinking outside the box” symposia have made cutting edge research accessible to the Queensland epilepsy community.



Looking to the future

Helen says-

“It’s been such a privilege to work at Epilepsy Queensland, honouring and carrying
on the legacy of the Kemp family and other founding members who originally fought so hard for the
rights of people living with epilepsy”.

She pays special tribute to Jan Taylor, Louise Foley and Fergus Pollock for their decades of dedicated service on the Board.

Helen’s time has seen many advances in treatments and our organisation’s efforts have made a difference, providing information and support to people in tough times. Until we have a cure for all types of epilepsies, our battle continues to ensure every Queenslander has access to these vital supports and we end the stigma associated with living with epilepsy.


A message from our Chairman

Epilepsy Queensland Chairman Sam Bryce shares:

“As a person living with epilepsy and parent to a child who is also affected by the condition, I will be ever grateful to Helen for all of her efforts. As Chairperson of Epilepsy Queensland, I have every faith that the team will carry on her legacy and will continue to evolve and provide the vital supports needed for all those impacted by epilepsy.”

“I am also grateful for the involvement and support of all of our members and supporters. It is always anhonour to hear your stories of living with epilepsy and see the support everyone has for each other inour community. My best wishes go out to Helen,” Sam says.

Epilepsy Queensland