What we do After losing her mum to motor neuron disease, Jen Smart saw a need to support grieving families.
“I always wanted to make people aware that if families feel supported then it helps the person living with motor neuron disease,” she says.
Jen ran a Taranaki support group for 10 years in 1992 after her mum Phyllis died aged 62. Watching her friends’ recent devastating journeys has spurred her into action.
“I grieved turning 62 as Mum was a committed volunteer passionate about helping others. She had so much to give.”
After a year of Jen’s four siblings being told by doctors that their mum had depression or had suffered a stroke or a breakdown, they were shocked by her diagnosis as there was no family history of motor neuron disease.
“I quickly organised our wedding as Mum couldn’t walk or talk four months later. But throughout the whole ordeal, she was bright and never complained. We all looked after Mum at home as back then hospice was only for people with cancer.”
Motor Neurone Disease New Zealand Regional Support Advisor Megan TeBoekhorst travels from Hamilton to visit 15 people living in Taranaki with a fatal illness.
“People are amazing – they learn to take each day as it comes,” says Megan. “While we haven’t found a cure, you can make life easier for them and their families.”
Photo caption: Jen (left) & Megan (right) are bringing together whānau impacted by motor neuron disease
The group will meet every third Wednesday in the vicarage at St Mary's Cathedral Church. The next meeting is Wednesday 22nd May at 10.30am. Inquiries to jennifer.smart@taranakicathedral.nz
Jen was also part of a group of wonderful volunteers who served kai made with love at Taranaki Cathedral's Good Café in March 2024. Neurological Foundation supporters came together to show their support and a whopping $650 was raised for investment in life-changing research.
The café is planning another fundraising event in June.
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