WA Families band together to fight killer,Duchenne muscular dystrophy
285 views | +0 today
Follow
WA Families band together to fight killer,Duchenne muscular dystrophy
Two West Australian mums have joined forces to raise much needed awareness and funds for Duchenne muscular dystrophy (DMD) – the number one genetic killer of boys in the world.
Curated by GalaBlueBall
Your new post is loading...
Your new post is loading...
Scooped by GalaBlueBall
Scoop.it!

WA Families band together to fight killer muscular dystrophy

WA Families band together to fight killer muscular dystrophy | WA Families band together to fight killer,Duchenne muscular dystrophy | Scoop.it

Two West Australian mums  have joined forces to raise much needed awareness and funds for Duchenne muscular dystrophy (DMD) – the number one genetic killer of boys in the world.

 

The families - who are all facing the heartbreaking reality of losing their precious sons to the disease - have set themselves the ambitious task of hosting a gala charity ball at the Esplanade Hotel Fremantle on Saturday 26 May 2012.

With the help of friends and Patron, cricketing legend Brad Hogg, they are hoping to raise money to buy desperately needed equipment that will improve the quality of life for boys suffering DMD.

 

Duchenne affects one in every 3500 boys across the globe.

It is characterised by progressive deterioration of muscle causing loss of movement, which leads to total immobilisation.

The disease eventually progresses to the heart and breathing muscles meaning the boys cannot breathe unaided and the heart loses the ability to pump effectively.

The fact that it is genetic does not mean it is confined to certain family trees – in a third of all cases the genetic mutation happens spontaneously without any previous family history.

 

Pam Bianchi – mother of 21 year old DMD sufferer Domenic – is one of the driving forces behind WA’s Gala Blue Ball.

“I cannot describe the feeling of knowing your child has a disease that will one day take him from you,” said Pam.

“This journey has not been an easy one for Domenic, or us. To watch as your son slowly loses the ability to walk, and to have to depend on a wheelchair for mobility.

“To see him struggle to move his arms in trying to do the simplest things that we all take for granted, in his bid to be as independent as he can.

 

“To put his breathing machine on at night time, to help him use the cough assist machine, because his muscles are too weak to cough effectively....it is heart breaking.

“He hasn’t been able to hug us for years.....I miss my sons hugs most of all,” she said.

Pam and fellow Director Klair Bayley have established the WA chapter of the Duchenne Foundation to put the spotlight on the fatal disease and help raise money to assist families living with the impact of such a debilitating condition.

 

“We need funding for research for the boys of tomorrow and to improve the quality of life for the boys of today,” she said.

The inaugural Gala Blue Ball takes place on Saturday 26 May 2012 at the Esplanade Hotel Fremantle.

Hosted by media personality Tim Gossage and featuring Australian Entertainer of the Year Brad Blaze, sumptuous food and drink and plenty of entertainment. Top Perth showband, Topkats will have you rocking the night away. The event features live and silent auctions with a $20,000+ bathroom renovation being the top billed prize of the live auction

Tickets are $175 each or $1500 for a table of ten.

All proceeds go to the Duchenne Foundation – an organisation run entirely by parents and volunteers across Australia.

For tickets or more information visit www.duchennefoundation.org.au or call 1300 706089 or email galablueball@gmail.com 

more...
No comment yet.
Scooped by GalaBlueBall
Scoop.it!

The list of FANTASTIC donated items continues to grow...

The list of FANTASTIC donated items continues to grow... | WA Families band together to fight killer,Duchenne muscular dystrophy | Scoop.it

Check out our evergrowing list of donated items that will be featured in the Auctions, raffles and as door prizes! A BIG thank you to the wonderful kind hearted people and businesses that have donated.

http://www.duchennefoundation.org.au/files/nrteUploadFiles/62F052F201243A273A26PM.pdf

 

more...
No comment yet.
Scooped by GalaBlueBall
Scoop.it!

The Ballroom

The Ballroom | WA Families band together to fight killer,Duchenne muscular dystrophy | Scoop.it

The Ballroom, where we will be holding our function

more...
No comment yet.
Scooped by GalaBlueBall
Scoop.it!

Topkats to play at the Inaugural Gala Blue Ball!

http://www.youtube.com/watch?v=6-6a83ZIv7Q&noredirect=1

more...
No comment yet.
Scooped by GalaBlueBall
Scoop.it!

Be the FIRST in WA to see Brad Blaze in Action!

Be the FIRST in WA to see Brad Blaze in Action! | WA Families band together to fight killer,Duchenne muscular dystrophy | Scoop.it

http://www.youtube.com/watch?v=FZo2HRfYmfs&feature=related

Brad Blaze is a speedpainter, one of, if not the fastest in the world.

He paints large portraits generally in less than four minutes on a spinning canvas.- come and see this awesome artist at work! Be one of the first in WA to see his show at the Inaugural Gala Blue Ball on May 26 2012, at Fremantle's Esplanade Hotel. 

 The funds raised from this prestigious event are essential for the Duchenne Foundation to support further research into this fatal disease and generate awareness which will enable the Foundation to enhance and foster what matters most to the Duchenne community: to improve the treatment, quality of life and long-term outlook for boys affected Duchenne Muscular Dystrophy. We look forward to a future when a diagnosis of Duchenne won’t mean a loss in a family. Together we can make it happen.

more...
No comment yet.
Scooped by GalaBlueBall
Scoop.it!

Brad Hogg supports Duchenne Foundation and the Gala Blue Ball

Brad Hogg supports Duchenne Foundation and the Gala Blue Ball | WA Families band together to fight killer,Duchenne muscular dystrophy | Scoop.it

January 2012

 

Friends and supporters of the Duchenne Foundation,

It is with great pride and humility that I am afforded this role as Patron of the Duchenne Foundation.

 

I’m a sportsman. I have lived many dreams, wearing the baggy green for this great nation, travelling the globe, and playing with and against the world’sbest. How does a man like me even begin to understand what it would be like to be without the full use of my body, strength, and completecontrol over how I choose to use it? For that, I am grateful.

 

I’m a father.Each day my daughters rise out of bed, make their way through school, develop a wide circle of friends, play sport, dance, and grow. They have everything they need to be a success - run a marathon, become Prime Minister, marry for love, have children of their own. Their missed opportunities will be of their own choosing. For that–I am grateful.

 

I’m a neighbour… I’m the bloke next door with the two kids, a family sedan, a busy job, and an ever growing To-Do list on the fridge. I don’t get enough time to see my mates as often as I’d like, attend

 very Dockers game, do the weeding. And still, I am grateful.

 

The founders of the Duchenne Foundation are mothers, fathers, siblings, carers, aunts, uncles, and grandparents. They are ALL volunteers. They have no office, no staff, little funding, no salaries. They are tired of being overlooked in the competitive world of funding distribution in their quest to cure this genetic disease.

 

Duchenne is single-handedly the most common and severe neuromuscular disorder affecting mostly boys and some rare girls. It’s time they saw some action that affects real outcomes in the homesand lives of those living with Duchenne.

 

You can help – in small ways and big. Buy a ticket to their Annual Gala Blue Ball (or knock yourself out and buy a table), make a cash/goods/or services donation, become a sponsor, host a fundraiser … talk to us, we’ll find a million ways in which you can help.

 

For my part, I humbly accept this role and I very much look forward to working with these amazing Duchennians whose courage, grace, and sheer determination to nurture hope –put them fair and square on my list of heroes.

 

Batter up… let’s get some runs on the board for Duchenne! Who’s with me?

 

Brad Hogg -

Australian International Cricketer

more...
No comment yet.