GET INVOLVED

​Everyone has a Role to Play!


Everyone has a role to play in improving the lives of children who are living with long-term health conditions in resource-poor countries of the world. It is beyond the reach of the health sector and families alone to effect long-term, sustainable change on the global scale needed for genuine realisation of the rights of children living with chronic health conditions in resource poor countries.

If we are to see REAL change, everyone MUST come together and work in true partnership. This will require people in low and high income settings to come together, and engage with one another in respectful partnership and two-way consultation.

Identifying groups of children who are living with the same health condition as members of a distinct, united, international community, CLAN takes a community development approach to effecting sustainable change. We achieve this through our 5 pillared strategic framework for action.

When planning action to support and empower communities of children and their families, CLAN takes on an advocacy role, using any power it has to tap into the voices of the children and families, and support them in their efforts to achieve better lives. For many families, when their child is diagnosed with a serious, long-term health condition, life can be such an enormous struggle that they are unable to personally be involved in advocacy efforts to effect change. Worse still, if their child dies, the stories of the families are rarely heard, and in fact are usually lost to the world forever. CLAN recognises that particular effort must be taken to listen to the voices of these children and families, so their stories are not lost, but rather can contribute to a global effort for change for children everywhere.

The range of stakeholders that CLAN seeks to involve are broad, and include:
- children and families living with long-term health conditions
- health professionals
- pharmaceutical industry
- business & industry
- philanthropy
- policy makers
- national and international communities
- education, labour & other government ministry sectors
- the arts
- the media

Only through a broad, cross-sectoral, systemic approach will sustainable inroads be made, impacting not just on the health of children alive now, but on those that are yet to come. CLAN acknowledges the power of the Social Determinants of Health, and actively considers how such factors can be incorporated into all of our planning.

What might your role be? 
Please ask yourself... "What can I do to help?"

FUNDRAISING


CLAN is a not-for-profit, charitable organisation, and we greatly appreciate any fundraising efforts that anyone is willing to undertake to progress our work to help the children.

Some examples of great fund-raisers that friends of CLAN have conducted include marathon runs with sponsorships.

Our current fundraisers are online at GoFundraise - see if there's something there you want to support!

If you have a special knack for fundraising and would like to get involved in the work of CLAN, please contact us.

Rainforest Ramble for CLAN in 2012!
After a beautiful trek around the beaches and mangroves in 2011, CLAN is this year taking on the rainforests of Mt Kiera and Mt Kembla to help children living with  Duchenne Muscular Dystrophy in Vietnam - thanks so much to our fabulous walkers!

Establishing a Duchenne Muscular Dystrophy (DMD) Club in 2012

This year, CLAN is raising money to establish a new Duchenne Muscular Dystrophy (DMD) Club in Vietnam. DMD is a disorder of the muscles that results in progressive muscle degeneration and weakness. This affects mobility, but importantly also affects the muscles of breathing and the heart. DMD is a genetic condition caused by the absence of the ‘dystrophin’ protein, which stabilises the muscle membrane. Boys are primarily affected, and symptoms generally appear around 5 years of age. Leg muscles begin to weaken, causing the boys to fall more often, and have difficulty keeping up with their peers. Untreated, muscle weakness progresses relentlessly, and most boys need to use a wheelchair before their teens, they develop difficulty breathing in their teenage years, and lifespan is shortened to late teens - early twenties without specialist intervention.

CLAN has been asked by the National Hospital of Pediatrics in Hanoi to help establish a DMD Club for the 650 boys currently under their care. Currently there is very little available to families in the way of treatment and support in Vietnam. There are no educational resources yet available in Vietnamese language on DMD, nor forums for families to meet and learn more about the best ways to care for their sons and help them enjoy the highest quality of life possible. CLAN will focus on the translation of quality educational resources, conduct of a community Club meeting and other capacity building activities for the DMD community to effect sustainable, long-term change.

So how can we all help raise funds for the DMD Club in 2012?
CLAN’s fund raising efforts for the DMD Community of Vietnam will involve a fantastic night of talented artists presenting their own work and covers for easy listening and dancing on Saturday 2 June 2012 at the Wollongong Diggers Club and then a weekend of bush walking around Mt Kiera and Mt Kembla (see photo above of Mt Kiera!) on 11 and 12 August 2012. CLAN is hoping to raise $50,000 in 2012.

THANK-YOU!
Thank you to everyone who has participated in our fundraising activities in past years - we have exceeded expectations on so many levels. We hope you join us again as it is hoped that your participation and sponsorship will go some way to achieving this year’s goal. Wouldn’t it be wonderful if we could raise all that was required for the DMD Club of Vietnam - or more?

If you would like to know more about the walk, please contact us at   clanevents@tpg.com.au​
Walking Jervis Bay for CLAN 2011
This year our fantastic walkers are raising money to hold Nephrotic Syndrome Clubs at the three biggest children's hospitals in Vietnam, thank you!

An enthusiastic group of walkers have once again dusted off their trainers to raise money for CLAN (Caring and Living as Neighbours) by walking 45km around Jervis Bay on 15-16 October 2011
.
The group hopes to build on their 2010 Blue Mountains 6ft track walk success which raised over $20,000. Money raised from the 2011 Jervis Bay endeavour will help to establish family support groups for children living with Nephrotic Syndrome (NS - a chronic kidney disease) and  Osteogenesis Imperfecta (OI - Brittle Bone Disease) in Vietnam and continue to translate medical texts and information books into the different languages of the countries where CLAN works.

“The money raised from this walk will enable CLAN to sponsor education and training
days in Ho Chi Minh City where hundreds of families of children affected by Chronic
Kidney Disease will come together to learn and support each other for the first time.
Our inaugural ‘Kidney Club’ will be held at two of the largest children’s hospitals in Ho
Chi Minh City in November. We have also been asked to help start a Club for children with Osteogenesis Imperfecta (OI) at the National Hospital of Pediatrics in Hanoi, and plan to do this in November 2011”, says CLAN’s President Dr Kate Armstrong.

“Without the enthusiastic fundraising efforts of our incredible volunteers and the 80 donations for the walk can be made at:  www.gofundraise.com.au/page/JervisBayCLAN
CLAN (Caring and Living as Neighbours) is an Australian based, non-government organisation dedicated to the dream that all children living with chronic health conditions in resource-poor countries of the world will enjoy a quality of life on par with that of their neighbours in wealthier countries.

For more media information, or for interviews with organisers or participants:
-    Tracey Hawkins Budge for Furry Pig Media on 0414 096 452 or email  furrypigmedia@bigpond.com
Our 6 foot trackers walked for CLAN in September 2010
From 18-19 September 2010, some wonderful friends of CLAN walked a staggering 38km to raise funds to help translate some key educational resources into different languages for children living with long-term health conditions in Vietnam and Indonesia.

THANKS EVERYONE FOR YOUR AMAZING EFFORTS!!!

A friend of one of our walkers was inspired to put pen to paper with a touching poem...
​
Ode to Kendoll (aka "Bubbles")
​She said, "wear comfy shoes", as I head off up the track
First she smiled and then she cried, in case I don't come back.
So here I am trudging up the six foot track
It's Saturday now, and on Sunday I'll be back.

She said, "wear comfy shoes" and I wish that I had.
The blisters they are biting and my skin is just one crack.
I have walked eighteen kilometers, it's the same coming back,
I hate the Blue Mountains and I hate this bloody track!

She said, "wear comfy shoes" as I struggle with my team,
Leadership is difficult when one's a Drama Queen.
She's stuck in the middle of the only swinging bridge
And me without champagne, how difficult is this?
I should have worn "comfy shoes" or maybe stayed at home
My fitness is a bother, my hair it needs a comb.
Grace will be so proud of me, I've done it step by step
And raised a lot of money, so from me, No Regret.

Anon.
Sandy Henderson runs marathon for CLAN in 2009. 
Thanks Sandy!!