Global MND/ALS Awareness Day: a time to remember, a time to take action

Sunday 21 June is Global MND/ALS Awareness Day. It's a day that falls on the solstice for a reason. When the global community pauses and speaks with one voice to raise the visibility of this disease that demands urgent action.

Here in Aotearoa, we remember and honour the 139 MND NZ clients who have died with motor neurone disease (MND) since last year's awareness day. We stand alongside those living with it across the motū and the globe, and we reflect on what action we can take to truly make time count.

Michael Cockcroft (40), his wife Lara (42), and their two daughters Charlie-Louise (8) and Evelyn (2) are a family who know what it means to make time count in meaningful ways.

Diagnosed with MND as a 34-year-old, father-of-one in 2020, Michael set himself a goal to reach his 40^th birthday, which he achieved this year. In 2024, he became a father-of-two with the arrival of baby Evelyn.  

Prior to Evelyn’s arrival Michael and Charlie-Louise created a book together to welcome her little sister home. Michael wrote the story with eye-gaze technology and Charlie-Louise beautifully illustrated it.

“One of my favourite memories is watching Charlie-Louise read the story to Evelyn at the hospital before she came home,” says Michael.

Since then, there has been a second book – a Charlie-Louise version of the 12 days of Christmas, which was read on YouTube by Suzy Cato.

“What began as a way for me to stay creative as my disability progressed has grown into something much bigger. Through these books, I have been able to share stories with my kids, create lasting family memories, and continue doing something I love,” says Michael.

“I haven't been able to control what MND has done to my body, but I have been able to control how I respond to it. I've simply tried to make the best of what I have, find new ways to do the things that matter to me, and keep creating memories with the people I love.”

On this Global MND/ALS Awareness Day we are sharing Charlie-Louise’s illustration of MND through the eyes of a child (at top of page) – a young dad in his powerchair with his two daughters.  A drawing that literally illustrates why taking collective action matters – to support and advocate for those living with MND and their families, and support research that may one day find a cure, so other young families like the Cockrofts don’t have to go through this.

You can take action now by supporting our June MND Action Month.