Pass the Baton

27 March 2026

Today is Purple Day, 26 March.  Throughout March, we’ve been passing the baton across Australia – sharing stories and shining a light on epilepsy for the 1 in 26 Australians who will be diagnosed in their lifetime. Help us keep the momentum going:  It’s not too late to make an impact. Donate $26 in honourRead More...

25 March 2026

Arthur’s Story Beth never imagined that epilepsy would become part of her family’s life. Her son Arthur was diagnosed in January 2025 after months of testing. Like so many families, they were suddenly thrown into a world of medications, appointments, and sleepless nights, learning just how unpredictable and frightening epilepsy can be. But Arthur wasRead More…

10 March 2026

Maddison’s Epilepsy Journey At just 10 months old, Maddison experienced her first traumatic seizure. What began as an ordinary evening quickly became a life changing emergency. She was rushed to hospital, intubated, placed in an induced coma, and spent weeks in ICU as doctors worked to stop relentless seizures. Over the following years, Maddison enduredRead More…

20 February 2026

Meet Ember At just 10 months old, Ember began experiencing seizures that caused her to lose important development skills, including crawling and babbling. After numerous hospitalizations and treatments, Ember received a heart-breaking diagnosis of KCNT1, an extremely rare condition with only 300 known cases worldwide. Ember will be turning 5 this March, she continues toRead More…

20 February 2026

Beau’s journey Beau’s journey with epilepsy began with what seemed like innocent “staring episodes”. At the time, they were dismissed as fatigue or even post-COVID symptoms. But when his parents found him unresponsive in his highchair, they called an ambulance. Emergency responders witnessed another “staring episode” while in transit, leading to the revelation that BeauRead More…

20 February 2026

Introducing Austy Since being diagnosed with epilepsy at a young age, Austy’s journey has been one filled with courage and resilience. At four years of age, he began the ketogenic diet which, combined with medication, has helped him to lead a more stable life. While Austy still faces occasional absence seizures, these changes have meantRead More…

20 February 2026

💜Meet Margot💜 At just 2.5 years of age, Margot Daisy faces her battle with KCNQ2-linked epilepsy head-on. Her journey began with seizures striking at only 24 hours old. Despite her parents’ concerns, nurses initially brushed off the signs, attributing them to “mucus.” However, Margot’s parents persisted until a paediatrician witnessed a seizure and rushed herRead More…

20 February 2026

💜Meet Ash💜 “Purple Day means a lot to our family. My daughter Ash was a bright and bubbly girl until she was diagnosed with epilepsy and her life changed forever. She experienced many types of seizures: absent, tonic clonic, gelastic, focal, generalised, myoclonic, atonic and non convulsive status epilepticus. She was also diagnosed with encephalitisRead More…

23 January 2026

Our 15‑year‑old daughter, Sasha, has been selected to represent Australia in an All Abilities dance team competing at the World Cheerleading and Dance Championships in April 2026 in Orlando, Florida. This is a once in a lifetime opportunity and something Sasha has worked incredibly hard for through the Madeline Stuart Dance Company. Reaching this level,Read More…

16 July 2025

30 June 2025 Citrate is essential for the metabolism and development of neurons. A membrane transport protein called SLC13A5 plays a central role in this process and has previously been linked to a particularly severe form of epileptic encephalopathy. Building on data from the recently completed RESOLUTE and REsolution flagship projects, scientists at CeMM haveRead More…

16 July 2025

7 May 2025 Scientists at St. Jude Children’s Research Hospital developed a cortical organoid model for UBA5-associated encephalopathy, revealing a new way to possibly address developmental defects. UBA5 disorder is considered an ultra-rare condition which affects brain function, but a new cortical organoid model presented in Science Translational Medicine today reveals key defects which may be targetable.Read More…

16 July 2025

16 June 2025 A new study led by researchers at University of Iowa Health Care has revealed a significant association between high blood pressure during pregnancy (gestational hypertension) and an increased risk of seizures in children. The study, published June 16 in the Journal of Clinical Investigation, used extensive clinical databases and innovative animal modelsRead More…