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Exciting news from the neuro research world...
Parkinson’s disease was first described more than 200 years ago. In 1997, US researchers made the first Parkinson's genetic connection. Now, researchers have found a single gene variant that causes early-onset Parkinson’s (EOPD) in New Zealand’s Pasifika community, likely passed down from generation to generation for thousands of years. This new knowledge will stamp out stigma and lead to early diagnosis, treatment and, hopefully, a cure.
Associate Professor Grant Searchfield began working on a treatment for tinnitus 20 years ago. A small grant from the Neurological Foundation helped kick-start a study combining hearing aids with low-level electrical stimulation of the brain. Fast-forward two decades, and a smartphone-based digital therapeutic that’s been developed by Grant’s team can at least halve, and sometimes almost eliminate, tinnitus, offering welcome relief to sufferers. It’s an example of how small research projects completed over time can lead to successful treatments as new technologies become available. Inchstones, inchstones — milestones.
Help make a difference to the 1 in 3 Kiwis with a neurological condition.
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Life with a neurological condition can make small tasks seem huge.
For people living with a neurological condition, small achievements can be a very big deal. We call these wins inchstones, because they're one step closer to a milestone. Read these stories of Kiwis living daily with neurological conditions and what an inchstone looks like to them.
Ava was born prematurely via emergency c-section at 31.5 weeks due to her mum having a placental abruption. She went to the intensive care unit and was progressing as well as any baby born at her gestation could.
After several weeks of tube feeding, sleeping and growing beautifully, we noticed she struggled with breastfeeding, and got very tired. Tests showed some cysts on her brain. Ava was then diagnosed with Periventricular Leukomalacia (PVL). This could have occurred due to a lack of oxygen reaching her brain during her traumatic birth.
We went home knowing Ava had some brain damage, but not how — or if — this would affect her growth and development. The doctors reiterated that a baby’s brain has high plasticity and that, when information travelling through the brain may hit a difficult patch, new pathways can be formed. We found this fascinating and it gave us hope. But it was a wait-and-see.
I had a sudden unexpected seizure in the middle of the night. I was 41 and had never had a seizure before. I don't remember it at all, but it was frightening for my family. My then 8-year-old daughter heard me fall out of bed and found me on the floor having a grand mal seizure. My head was banging against a desk and she didn't know what to do. I was unconscious by the time my husband found me and the first thing I remember was when paramedics came into my bedroom.
I worried about my daughter having witnessed my seizure. She started sleeping in my bed — I guess she was being protective. I think I started having petit mals (smaller seizures) in my sleep. She could spot the jerking, repetitive movements and seemed to be able to snap me out of it by waking me up, so that was a silver lining. Epilepsy is a tricky disorder because you don't know if you've had a petit mal unless someone witnesses it.
I spent months worrying I was going to have another seizure, particularly at night, which meant I lost a lot of sleep.
Ross lives with Parkinson’s disease, a disorder that causes unintended or uncontrollable movements and gets worse over time.
Leg twitches, cramps and anxiety attacks caused him to seek medical help. His wife, Lindy, said, “You can't have Parkinson's Disease - you're too young!” Sadly, she was wrong. Ross was diagnosed at the age of just 43.
Instead of giving in to the disease, Ross and Lindy faced it with courage and determination. In Lindy’s words, “Ross's diagnosis came as a shock to us both, but we made a pact early on to continue living, as much as possible, as we always have.”
Since his diagnosis, he has often measured daily achievements in inchstones: tying his shoelaces; doing up buttons; making it across the room without spilling his cup of tea.
But there have been milestones, too. The first came with drug treatment.
Your gift will help neuroscientists
Gain a deeper understanding of the causes of conditions such as cerebral palsy and improve outcomes for Kiwis like Ava.
Make treatment for conditions like Parkinson's more effective, for longer, enhancing quality of life for people like Ross.
Investigate the different types of epilepsy so that treatments can be more precisely targeted to individuals like Danelle.
"Because of you, new prevention and treatment methods can be developed. And because of you, cures aren't a matter of if, they're a matter of when."
Dr Sarah Schonberger, Head of Research, Neurological Foundation
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Thank you for joining us on the pathway to hope
RA and JI Brown
L A Kinniburgh
Tony and Helen Chadwick
With our special thoughts for really lovely person
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In memory of Owen David Buckingham