Saturday, May 19th, 2012 - Duchenne Foundation
A small group of Western Australian families have joined forces to raise much need 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 event 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.

DMD 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 Dominic – is one of the driving forces behind WA’s Gala Blue Ball.

“I cannot describe the feeling of knowing your child had 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 for DMD 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, the event features live and silent auctions, sumptuous food and drink and plenty of entertainment.

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

All proceeds go to the Duchenne Foundation.

For tickets or more information visit www.duchennefoundation.org.au or call 1300 706089.

Contacts

Jo Ann Blizzard
phone:08 9388 0944
mobile: 0416 038 787
email: [email protected]