Help our families with CHARGE Syndrome to connect and learn
Please help us to bring together our families living with CHARGE Syndrome. CHARGE Hui, Christchurch, NZ, March 2026.
Christchurch, Canterbury
Every two years we try to fundraise enough funds to hold an event where New Zealand and Australian families living with CHARGE Syndrome can come together to make connections, friends and to learn more about the Syndrome from Professionals who specialise in this area.
CHARGE Syndrome is relatively rare (1 in 12,000) and individuals and families are spread far and wide. We hold the event to give people a chance to meet and spend time with others who are facing the same challenges, and the opportunity to ask questions and plan for their futures. Without fundraising we cannot hold the event.
Use of funds
The money we raise will go towards the costs of the 3 day event so that families are not having to pay for everything themselves. In particular the costs involved in bringing the professional speakers who specialise in this syndrome from overseas.
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Latest update
Sarah's 8km walk challenge completed! 8 August 2025
They dit it! On a wet and cold Wanaka day Sarah, Aimee and their crew have completed the 8km walk!
CHARGE Syndrome can have a real impact on the vestibular system which is reponsible for maintaining balance and spatial orientation. So for someone with CHARGE Syndrome an 8km walk is a real achievement. Super proud of these guys and how they are repping and raising awareness for our CHARGE community.
Thank you to everyone who has donated in support of Sarah and Aimee.
Watch this space to see what's next in our efforts to get our families conncected at the hui next year.
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