For Charlie & families with PWS.

$2,247 of $2,000 goal
Given by 38 generous donors in around 6 months

Fundraising for Prader-Willi Syndrome Association NZ


• My work colleague’s son has this rare condition called Prader-Willi Syndrome (PWS). It's a complex neurodevelopmental disorder resulting from an abnormality at chromosome 15. It is associated with a wide range of symptoms, including hypotonia (low muscle tone), hyperphagia (excessive appetite) and altered metabolism. It has impacts on cognition and causes learning disabilities, anxiety and impaired emotional regulation. Many symptoms are thought to be brought about by dysfunction of the hypothalamus in the brain.

• Charlie, is a very kind hearted boy and quite a fan of running himself...having recently completed the colour run with his local school. Life is a wee bit harder for Charlie… born with low muscle tone, he has delayed development and often has difficulty regulating his emotions. Charlie has also recently developed scoliosis (curvature of the spine), and will at some point experience major challenges with food, such as not feeling full after a meal. Some kids with PWS have an insatiable appetite from age 2 as their brain doesn't tell them they are full from food.

• The PWSA (NZ) helps to make life a little better for children like Charlie, and their families. They do this by providing ground-level advocacy, education, and support. Your donations will directly benefit kiwis associated with PWS and improve their quality of life.

• I'll be running the Paris Marathon in April to raise funds for PWS, I'm hoping for $2k, $2 for every km I'll run in training for the race.

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Latest update

Extend date  2 May 2024

Hopefully more donations to come.

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Activity tracking

Total distance covered: 1,095 km

Latest activity

Morning Walk  31 May 2024

Exercise map
22 mins
1.5 km

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Latest donations

Clara on 02 May 2024
Private Donor
Private Donor on 11 Apr 2024
Jar on 07 Apr 2024
Rory on 07 Apr 2024
Great work. Lots of love Charlie from the Futter Whanau. Rory, Hannah, Tommy & Leo
Craig James

Thanks you so much!

Craig James
Guest Donor
Guest Donor on 07 Apr 2024
Thanks Craig for supporting Charlie & everyone with PWS

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Created by Craig James
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This campaign started on 21 Nov 2023 and ended on 31 May 2024.