Charity Hits the Road to Drive Donations

A New Zealand charity dedicated to improving the lives of Kiwi kids with Down Syndrome, will hit the road this week with a unique campaign aimed at generating funds and raising awareness of its nationwide educational programme.

The UpsideDowns Education Trust has today launched Cheeky Lily’s Big Adventure – the initiative will see a 1963 VW beach buggy driven the length of the country in a bid to create national interest in the charity and the work that it does.

Established in 2002, the Trust provides specialist early education assistance to New Zealand children with Down Syndrome to improve their learning development and help them integrate more fully into the community and mainstream school system.

Down Syndrome is the most common genetic disorder in New Zealand with around one child in every 800* born with the condition.

Cheeky Lily, a bright aqua beach buggy, is the creation of Auckland man Glenn Doodes whose cousin and Cheeky Lily’s namesake Lily Mae aged 6 is a recipient of the Trust’s education programme.

Doodes will guide Cheeky Lily from Kaitaia to Bluff over a six day period stopping in towns and visiting schools and families along the way.

“Given the challenges children with Down Syndrome have, by far the most effective thing they can receive to help them live a fulfilling and meaningful life is better education. I hope Cheeky Lily’s Big Adventure will help many more children have access to this,” says Doodes.

The UpsideDowns Education Trust chairperson Melanie Brabin says while research has shown that integrating students with Down Syndrome into mainstream education does improve their cognitive skills, more needs to be done to close the gap between them and their peers.

The Trust’s education scheme goes some way to addressing this with the provision of an in-home specialist programme which includes one-on-one training from a fully qualified speech therapist, she says.

“Early education programmes such as ours which focus specifically on the visual teaching methods of reading and picture prompts can lessen the impact of verbal processing difficulties. This means we can speed up speech, language and cognitive development and even the playing field for when they hit school,” she says.

In just a few years the UpsideDowns Education Trust has offered 50 families access to the programme, but there are currently nine families on the waiting list and a further 600 that could benefit from the same opportunity.

Brabin says funds raised during Cheeky Lily’s Big Adventure will mean those children waiting for the programme may now receive it.

“We hope that by generating greater awareness of the Trust and what we do, more children with Down Syndrome will be able to benefit from the early educational opportunities we can provide them,” she says.

Brabin says the annual cost of the Trust’s early intervention education programme is around $3,200 per year, per child. The Trust covers 80% of the costs of the education.

Children from six months old can be offered the programme and Brabin says the earlier a child starts the greater the chance and range of positive impact.

To make a donation or to find out when Cheeky Lily will be in your town visit www.upsidedowns.co.nz/donations.html

Cheeky Lily’s Big Adventure Key Dates

Day 1 Sun 28 Feb Kaitaia - Auckland
Day 2 Mon 1 Mar Auckland - Hamilton - Rotorua
Day 3 Tue 2 Mar Rotorua - Paraparaumu
Day 4 Wed 3 Mar Paraparaumu - Wellington - Picton - Christchurch
Day 5 Thu 4 Mar Christchurch - Dunedin
Day 6 Fri 5 Mar Dunedin – Bluff

Notes to editors:




*NZ Down Syndrome Association – In NZ Down Syndrome occurs in approximately 1 in 800-1,000 live births.



The UpsideDowns Education Trust programme:



The UpsideDowns Education trust is a non government funded Charitable Trust registered with the charities commission.

The UpsideDowns Education Trust ensures New Zealand private speech therapists are trained in the latest teaching methodologies which are the most effective for children with Down Syndrome.
The speech therapist will visit the family or caregiver at home every two weeks. An individual early intervention programme will be developed for each child based on their age and current abilities. The Speech therapist will tutor the caregiver during this fortnightly session and the caregiver will then deliver the programme to the child on a regular basis (say 4 times a week). On the next visit the therapist will run through the programme and update material and course content depending on observations made at the session.

Children of all ages are included in the membership, however it is generally accepted that the earlier a child starts, the greater the chance and range of positive impact.
Norm and Arlene Hewitt are the current Trust patrons with Barbara Kendall also lifting the charity’s profile selecting it as her chosen charity during her stint on Dancing with the Stars.
More information on the trusts mission, services and current activities can be found at www.upsidedowns.co.nz