Home' Scoop : Scoop 69 Spring 2014 Contents 120
Instead of kicking the footy like his pals, nine-
year-old Perth boy Conor Brown‘s extracurricular
activities involve weekly injections and multiple
medical appointments. And, while his friends gorge
on cake or fish and chips, he’s on a strict limit of
10 grams of fat a day – and his life depends on it.
Conor has lymphangiectasia – his lymph system
did not form properly, resulting in a build-up of
excess fluid that seeps into the tissues. It’s rare.
So rare he is the only person diagnosed with it in
Australia. And there’s no cure.
When he received the diagnosis at just four
months old, his mother, Samantha Brown, was in
shock. “When the doctors came in and told us, my
husband and I stared at each other, and said, ‘We
don’t even know what that is’. The information isn’t
out there, you’ve got no one who understands.”
But when Samantha met Aydee Edwards
at a Telethon event, she found someone who
A new digital platform seeks to
unite the community sector in
WA, providing community service
workers easy ways to share
information and network.
“Working together seems simple,” says
Kylie Hansen, who manages WA community
platform DropIN, “but in practice it can be
difficult.” She’s talking about the non-profit
sector’s reluctance to converge (usually
due to a competitive funding environment)
despite the manifold benefits of doing so.
Launched by the Western Australian
Council of Social Service, DropIN aims to
make working together easier, as well as
providing the opportunity to collaborate
with government and corporate partners.
The online platform for community
service workers is a mishmash of your
fave professional networking sites: like
LinkedIn, you can create a profile and
communicate with networks you’re
involved with; like Dropbox, you can store
documents that relate to your networks
and their meetings; and like Google
Groups, you can communicate with
others about your work.
“There is little question increased and
enhanced collaboration between all sectors
leads to more, higher-quality outcomes for
individuals and communities,” says Kylie.
“Innovative service delivery models that are
gaining traction worldwide are all centred
on how organisations work better with one
another, and become less organisation-
centred and more outcomes-focused.”
Visit dropin.org.au for more information.
THE FUNDING NETWORK
A global network that offers an innovative crowd-funding model is raising
money across a number of WA social endeavours.
You don’t have to be Twiggy Forrest to be a philanthropist. In fact, philanthropy is more accessible
than ever thanks to an innovative new non-profit that’s using crowd funding – with individual
donations of $100 and up – to launch the projects of social entrepreneurs. The Funding Network has
been hosting live crowd-funding events across the globe since it was started by a London art dealer
in 2002, and in April this year it launched in Perth, giving financial support to a diverse range of WA
social projects. More than $10,000 apiece has been raised for The Imagination Games (a motivational
project that seeks to engage students in imaginative play); Mobile GP (which provides healthcare for
homeless and marginalised people); Zanders Community Education (providing life skills coaching
for Aboriginal students); and South East Asia Investigations Into Social and Humanitarian Activities,
which strives to protect human rights in South East Asia. Here at Scoop, we’re all about making
philanthropy mainstream, so we encourage everyone to get on board.
recognised her struggles all too well. Aydee’s eight-
year-old daughter, Sophie, has juvenile arthritis and
avascular necrosis – her bones are slowly crumbling.
The little girl, who is terrified of needles, needs
fortnightly injections, three-monthly infusions, and
six-monthly MRI scans. Some days, she struggles
to walk and requires a custom-made wheelchair.
Again, there is currently no cure.
This year, Samantha and Aydee founded Hope
Warriors to fund research into extremely rare
childhood diseases. Working with Telethon, they
hope to set up a rare disease research facility in
WA, but perhaps more importantly they’re focused
on building connections for those who need them.
“It can be a tough road,” says Samantha.
“Aydee and I are keen on developing strong
support networks so other children and parents
don’t feel quite so isolated.”
See hopewarriors.com.au for details.
Two mothers have launched a foundation with Telethon to fund research into
extremely rare childhood diseases.
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