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EPILEPSY NEW ZEALAND WELCOMES A NEW AMBASSADOR

30 January 2026

Epilepsy New Zealand (ENZ) is proud to announce the appointment of International Test Referee Angus Mabey as a new Ambassador, supporting our work to raise awareness, reduce stigma, and advocate for the estimated 50,000 New Zealanders living with epilepsy.

Angus Mabey is a professional rugby referee with New Zealand Rugby, officiating at club, NPC, Super Rugby, and international test levels. Before moving into professional refereeing, Angus spent over a decade in the media industry, working both on-air and behind the scenes at Newstalk ZB and Radio Sport.

Angus is passionate about using his personal story to improve understanding of epilepsy and its impact on individuals, families, and whānau across Aotearoa, while also showing that an epilepsy diagnosis does not have to limit a person’s ability to achieve their goals.

“We are delighted to welcome Angus as an Ambassador for Epilepsy New Zealand,” says Tracy Tierney, Chief Executive of Epilepsy New Zealand.

“Having ambassadors who are willing to use their voice, and platform, helps us challenge misconceptions about epilepsy and highlight the importance of education, inclusion, and support.”

Angus’s decision to become an ambassador is shaped by his own epilepsy diagnosis a few years ago. With the support of medication, he has successfully managed his condition while building a physically and mentally demanding career at the highest levels of sport.

“I’m proud to be joining Epilepsy New Zealand as an Ambassador,” says Angus Mabey.

“Epilepsy is often misunderstood, yet it affects thousands of people across the country. I’m looking forward to supporting ENZ’s work and helping raise awareness and understanding.”

In his role as an Ambassador, Angus will support Epilepsy New Zealand through awareness campaigns, media opportunities, events, and community engagement, helping to amplify key messages about epilepsy and seizure first aid.

Celebrating 70 years in 2026, Epilepsy New Zealand has a long and proud history of supporting people living with epilepsy through education, advocacy, and personalised support services throughout Aotearoa.

💜 Welcome to the ENZ whānau, Angus!

RESTORING PEACE OF MIND FOR LAWSON AND HIS FAMILY

Background: A Family in Crisis

For Crystal and Aaron, the start of 2025 brought a challenge that no parent wants to face. Their young son, Lawson, was diagnosed with epilepsy. The diagnosis brought with it a wave of fear and uncertainty, particularly regarding Lawson’s safety at night.

Terrified that Lawson might have a seizure while they slept and that they would not hear it, Crystal and Aaron made the difficult decision to have Lawson sleep in their bed. While this temporary measure reduced their immediate anxiety, it was not a sustainable long-term solution for the family’s wellbeing or sleep quality.

As Crystal candidly shared, “The last year has been hell for the family.”

The Intervention: A Collaborative Solution

Desperate for help, Crystal reached out to Epilepsy New Zealand. In a stroke of perfect timing, Epilepsy New Zealand had recently secured vital funding from the Roy Owen Dixey Charitable Trust.

This generous funding allowed for the purchase of two “Alert-it” Companion nighttime seizure monitors from Te Wana Ltd. These units were specifically designated as loan units, designed to offer families immediate, temporary access to safety technology while they navigated long-term funding options.

Anna-Lee, the Canterbury Educator for Epilepsy New Zealand, co-ordinated with Jonathan from Te Wana Ltd to assist the family. In a supportive joint visit, they went to Lawson’s home to help Crystal and Aaron set up the loan unit.

The Technology: The “Alert-it” Companion

The solution provided was the Alert-it Companion seizure alarm. The system uses a movement sensor pad placed under the mattress, which connects to a bedside Companion unit and transmits to a pager carried by the parents.

The device is sensitive and reliable. Crystal noted that during the day, the family cat sometimes sets it off. Rather than being an annoyance, she sees this as a positive: “It is not a problem and just proves it works,” she said, adding that it offers reassurance that the sensors are active.

Outcomes: Sleep and Safety Restored

The impact of the technology was immediate and profound. With the monitor in place, Crystal and Aaron regained the confidence to let Lawson sleep independently.

“Lawson is in his bed again,” the family reported happily.

For Crystal, the change has been emotional and physical relief. “It gives me peace of mind sleep,” she explained. “It’s been like a weight has been lifted off my shoulders.”

Securing the Future

While the loan unit from the Roy Owen Dixey Charitable Trust provided the immediate “bridge” to safety, the family needed a permanent solution.

Te Wana Ltd, an accredited supplier to the Ministry of Social Development (MSD), played a crucial role here. With support from Lawson’s neurologist, Jonathan provided the necessary technical information to Work and Income NZ (WINZ). This advocacy and administrative support allowed Crystal to secure full funding for a permanent alarm system for Lawson.

Crystal praised the support they received during this process, noting, “Jonathan made it easy and is a fantastic communicator.”

Conclusion

This case highlights the immense value of cross-organisation collaboration. Through the financial generosity of the Roy Owen Dixey Charitable Trust, the on-the-ground support of Epilepsy New Zealand, and the technical expertise of Te Wana Ltd, Lawson’s family moved from a state of constant fear to a place of safety and rest. As the family simply put it: “It does its job.”

2025 CHRISTMAS APPEAL Bring a Little Light This Christmas – Honour Dixon 💜

This Christmas, we invite you to help honour the life and legacy of Dixon, a vibrant and courageous 9-year-old boy whose light continues to shine through the lives he touched.

Dixon lived with Dravet Syndrome, a very rare and severe form of epilepsy that affects only a handful of children in New Zealand. Despite enormous health challenges, Dixon faced life with bravery, generosity and a spirit that inspired everyone around him.

He was a charismatic, caring young soul who loved helping others. Dixon raised funds for charities close to his heart and created tiny fairy gardens in public and private spaces – leaving behind moments of magic, colour and joy for others to discover. His bold, honest and funny nature gave his family and friends memories they will treasure forever.

Sadly, Dixon passed away on 23 September 2025, but before his passing he shared a simple, powerful dream – to grow and cut his mullet alongside his best mate Jacob, raising funds for Epilepsy New Zealand (ENZ) so other families living with epilepsy could feel supported and less alone.

This Christmas, that dream lives on.

In a beautiful tribute, Jacob will cut his mullet on 19 December, joined by Dixon’s cousin Davina, (who will also donate her long hair to the Cancer Wig Charity). Although Dixon won’t be physically standing beside them, his courage and determination remain at the heart of this fundraiser.

We kindly invite you to honour Dixon’s legacy by giving what you can this Christmas.

You can show your support in two meaningful ways:

• Donate to the “Growing Their Mullets For Charity” fundraiser:
  https://givealittle.co.nz/fundraiser/growing-their-mullets-for-charity
• Donate directly to Epilepsy New Zealand to help provide education, advocacy, practical resources and specialist support for families across Aotearoa: Donate Here

“We miss Dixon more than words can ever say, especially as Christmas gets closer,” says Dixon’s mum, Elisha. “Our home feels so much quieter without his laughter, but we are so proud of the love, kindness and light he brought into our lives. I am deeply grateful to everyone who chooses to support this fundraiser and Epilepsy New Zealand, because your kindness helps other families feel supported and less alone on their journey.”

Elisha adds, “Dixon taught us how precious time really is – to hold your loved ones a little closer, treasure every moment, and bring light to those who need it most.”

By supporting this appeal, you help carry Dixon’s light forward, bringing comfort, understanding and practical support to families navigating the daily challenges of epilepsy.

As the festive season approaches, our hearts are with Elisha and her whānau as they walk through this incredibly difficult time, and as they hold close the precious memories of Dixon’s laughter and love.

Please GIVE what you can this Christmas to make a difference.

With heartfelt thanks and aroha,

Bobbi Oliver
Fundraising & Marketing Manager

PS: Dixon’s family is also asking for support with the funeral costs if you can spare a few extra dollars you can help here – https://givealittle.co.nz/cause/dixon-loved-lost-but-never-forgotten

Assistant all Black Coach Talks About Epilepsy

An outstanding coach and rugby legend, Joe Schmidt and his whanau understand what it’s like to live with Epilepsy.

Joe Schmidt’s son has Epilepsy and Joe is an advocate for epilepsy services.

Epilepsy New Zealand are delighted to share Joe Schmidt’s contribution to understanding Epilepsy.  We are very grateful Joe was able to take time out from his busy coaching schedule to talk about Epilepsy. See video below to hear from Joe Schmidt:

At Epilepsy New Zealand we have nationwide educators who provide support and education.  Please get in contact with our educators today.

Donate to Epilepsy New Zealand now to support people living with Epilepsy.

Growing Their Mullets For Charity

In Memory of Andrea Hawkless: A True Epilepsy Hero

It is with deep gratitude and sadness that we remember Andrea Hawkless — a tireless advocate, compassionate volunteer, and true friend to all living with epilepsy. 

Andrea’s passion for supporting others was deeply personal. After losing her son to severe epilepsy, she continued to dedicate herself to raising awareness and improving the lives of families affected by the condition. 

As a valued member of the Auckland Branch Committee, Andrea volunteered countless hours to Epilepsy New Zealand (ENZ), helping to run the Branch and lead major fundraising efforts, including the annual Kumeu Wine and Food Festival — a joint effort with the Epilepsy Assist Dog Trust, which she also founded. Through her work, Andrea made it possible for people living with epilepsy to access life-changing assist dogs. 

Even after ENZ moved to a centralised structure, Andrea stayed in touch and continued her support. Well past retirement age, she remained an inspiring force in the community. 

Andrea was a warrior for change, a hero to many, and a friend to all. Her legacy of compassion and dedication will continue to make a difference for years to come. Our thoughts are with her family and friends. 

TARANAKI EDUCATOR PROVIDING VITAL SUPPORT

I would like to take this opportunity to thank  Epilepsy New Zealand  very much for the ongoing support we receive.

In our class (Te Rangimarie at Stratford High School) there are several students who have seizures and it is vital that our teacher aides and teachers have the knowledge of seizures and how to assist when a student has a seizure.

Every year we invite a representative from Epilepsy New Zealand to speak to our staff and this is always done in a professional and informative way. There are handouts to accompany the speaker as well as a PowerPoint Presentation which includes videos and the opportunity to practice giving Midazolam . We use the Epilepsy New Zealand Seizure Diaries for our students and very much appreciate having these.

Our annual visit from Epilepsy New Zealand is a critical part of our staff training programme. This afternoon we had Dianne Darbyshire present to us and we would like to acknowledge her and the support she has given to Te Rangimarie, Stratford High School over the years. We are confident we can support our students through their seizures as a result of the information she has shared with us.

Thank you again

Jeanette Bell, Te Rangimarie, Stratford High School

Cutting for a Cause: Alex's Bold Move to Empower People with Epilepsy

Alex may have epilepsy, but that hasn’t stopped him from chasing his dreams. With determination and heart, he’s built an inclusive gym and personal training service to help people of all abilities feel stronger, healthier, and more confident.

This Purple Day (March 26th), Alex is taking a bold step to make an even bigger impact. For years, he’s been growing his “luscious locks,” but now he’s ready to let them go. In a powerful show of solidarity, he’ll cut off his hair to raise funds and awareness for the epilepsy community – a cause that’s deeply personal to him.

“I’ve lived with epilepsy for 25 years, and I know firsthand the challenges it brings,” Alex shares. “That’s why I’m so passionate about raising funds for Epilepsy New Zealand. They provide life-changing support, education, and advocacy for people like me. But I also want to do more. I want to offer specialised personal training programmes for individuals with epilepsy, helping them build strength, confidence, and a sense of empowerment.”

The funds raised from Alex’s haircut will be split between Epilepsy New Zealand and his mission to make personal training more accessible for those with epilepsy. He dreams of a world where everyone, regardless of their diagnosis, can experience the physical and mental benefits of exercise in a safe, supportive environment.

By parting with his hair, Alex hopes to spark conversations and break down stigmas surrounding epilepsy. He wants the world to see that epilepsy doesn’t define a person – strength, courage, and determination do.

Every dollar raised will make a difference. Your support will help fund vital services and create inclusive fitness opportunities for people living with epilepsy.

If you’d like to be part of Alex’s journey, visit his Givealittle page to donate. You can also help by sharing his story with others.

Together, we can stand strong with the epilepsy community, raise awareness, and create a world where everyone has the chance to thrive.

Thank you, Alex, for being such an incredible supporter!

Rugby Player, Teacher and Author Puri Hauiti writes e-book inspired by son's epilepsy journey.

Son’s epilepsy inspires children’s story, providing positive guidance to those living with epilepsy.  Please read more here:

Prop to publisher: Former rep rugby captain’s journey to writing kids’ books – NZ Herald

Epilepsy Hero's; Thank you 2nd Whangarei Girls' Brigade for making a difference by fundraising for ENZ.

If you were walking the Hãtea Loop recently, you may have noticed some tutu-wearing girls carrying placards and walking with enthusiastic determination. The girls were a group from the local Girls’ Brigade, and the walk had a plan and a purpose – to make money to donate to their chosen organizations, Epilepsy NZ and Motor Neurone Disease NZ (MND).

The secondary school-aged girls meet once a week after school, and this year’s theme for the Brigade has been “Generosity”. With this in mind, Girls’ Brigade leader Sue Cammell asked the girls how they would like to show generosity towards their community and it was decided to make money to donate to an organisation of their choice. Money-making methods were whittled down to two – sewing heat packs to sell, and being sponsored to walk the Hãtea Loop.

Choosing an organisation to donate to was a democratic affair. Each girl researched and offered an idea – these varied from the I am Hope Foundation to adopting a donkey in Syria! However, after a vote and careful counting, Epilepsy NZ and MND NZ were tied for first. This is where democracy really kicked in and it was decided to equally split the proceeds between the two organisations.

Sewing the heat packs was a challenge for some of the girls who were not confident using sewing machines, let alone sewing in a straight line. However, twenty were completed and sold. This was a great start towards the generosity goal, but it has been the success of the sponsored Hãtea Loop walk that astounded Sue Cammell.  Finding sponsors and then following them up after the walk takes time and persistence, but the girls really came to the fore. Over both fundraisers, the 12 teens made an incredible total of $1027.70 to gift to each of their chosen organisations.

Sue says, “Our girls have learnt and shown that with a bit of creative thinking and determination, they can set and achieve big goals”.

So, with the kindness of sponsors and the heart-felt work of the girls, it seems that real generosity has won the day.

Written by Claire McIvor, 2nd Whangarei Girls’ Brigade.

ENZ in the News

No funds for epilepsy monitors leaves Northland solo mum relying on charity.

News Article  

HILARY ON THE RADIO

11 December 2024

Our Southland Educator, Hilary Thorne, sat down with Jack Lovett-Hurst, SOAR Coordinator at Nga Kete Matauranga Pounamu Charitable Trust, for an interview on his podcast S.O.A.R. With Jack!
Tune in to hear their chat on Radio Southland 96.4 FM.

CLICK HERE (S.O.A.R. with Jack-11-12-2024) to listen now!