Muscular Dystrophy Foundation is pleased to be working in collaboration with Save our Sons to raise awareness about Muscular Dystrophy, and in particular Duchenne MD.

Save Our Sons are raising $1.75m to support research into DMD and to bring human clinical trials to Australia. Through ‘the most powerful arm’ petition, they are asking the government to match their funds.

Find out more about their campaign.

For more information

Please contact the following Muscular Dystrophy Associations in your state for more information regarding the Little Heroes Care program.

Muscular Dystrophy New South Wales
Freecall: 1800 635 109
Email: info@mdnsw.org.au
www.mdnsw.org.au

Muscular Dystrophy Queensland
Freecall: 1800 676 364
Email: info@mdqld.org.au
www.mdqld.org.au

Muscular Dystrophy South Australia
(Also servicing the Northern Territory)
Call: 08 8234 5266
Email: info@mdasa.org.au
www.mdasa.org.au

Muscular Dystrophy Tasmania
Call: 03 6231 3273
Email: ashfords@dodo.com.au
www.mdtasmania.org.au

Muscular Dystrophy Western Australia
Call: 08 9382 2700
Email: info@mdwa.org.au
www.mdwa.org.au

Muscular Dystrophy associations across Australian support the Every Australian Counts campaign, calling for the introduction of a National Disability Insurance Scheme (NDIS).

“The NDIS will be a modern, person-centred support system, helping hundreds of thousands of Australians with disability and their families to have the opportunity to participate actively in their communities by providing targeted supports aligned to need.”

The NDIS will be portable – your entitlement to support will be the same wherever you live in Australia.”

We encourage every Australian to join the campaign.

To find out more about what is happening in your State, go to the Every Australian Counts website or contact your local muscular dystrophy association.

Neuromuscular conditions, including Muscular Dystrophy, are debilitating diseases that affect 1 in 1,000 people in Australia generally starting in early childhood.

While there have been vast improvements in the treatment of neuromuscular conditions, there is still more to be done. Thanks to Stand Tall for a Cure’s ‘Stand Tall Ball’, The Institute for Neuroscience and Muscle Research (INMR) and the Muscular Dystrophy Foundation will be able to channel much needed funds into Muscular Dystrophy research, education and advocacy.

The ‘Stand Tall Ball’ raised an amazing $120,000 towards researching for improved treatments and a cure for Muscular Dystrophy. The Muscular Dystrophy Foundation was allocated $36,000 to continue their education and advocacy in regards to neuromuscular conditions. The INMR was allocated $84,000 to fund research into Becker’s Muscular Dystrophy, a type of Muscular Dystrophy that involves slowly worsening muscle weakness of the legs and pelvis.

Drew Schofield, founder and chair of Stand Tall for a Cure, who is himself a sufferer of Becker’s, is confident that the money raised will make a difference. “This money is being placed in the hands of two organisations who will deliver upon what Stand Tall for a Cure is aimed toward – increasing awareness of the disease and finding a cure for all forms of Muscular Dystrophy”.

“Drew has certainly done his part in raising awareness and much needed funds and it was a wonderful opportunity to introduce Drew to Jerry Lewis when he visited Australia last year” said David Jack, CEO of the Muscular Dystrophy Foundation of Australia. “Jerry Lewis has raised over $2.5 billion over 60 years in support of advocacy, awareness, client services and research.”

In the lead up to the Stand Tall Ball, the Stand Tall Ball Committee met with Professor Kathryn North, Department Head of INMR, to gain an understanding of what research was being conducted at INMR.

“I was delighted when I was invited to speak the Stand Tall Ball,” Professor North said. “It is great to have developed a relationship with Stand Tall for a Cure, as our partnership can only bring good things to the area of Muscular Dystrophy research – especially in researching Becker’s”.

Becker’s is a form of inherited Muscular Dystrophy which mainly affects males. Similar to Duchenne Muscular Dystrophy, but progressing at a slower rate, Becker’s affects 3-6 people per 100,000 and generally starts to present around age 12.

The INMR is currently studying and identifying proteins and pathways that are involved in repairing muscle damage, and whether other membrane repair proteins will be able to aid in the treatment of Muscular Dystrophy.

“We have great plans for Standing Tall for a Cure,” says Mr Schofield.

ABOUT MUSCULAR DYSTROPHY FOUNDATION OF AUSTRALIA

Muscular dystrophy is a neuromuscular, genetic disorder which results in the progressive deterioration of muscle strength and function. The most common form in childhood is Duchenne Muscular Dystrophy, which can see a young boy using a manual wheelchair by the age of 8, and being completely dependent on an electric one by his early teens. Life expectancy for this disorder is usually only until early adulthood. There are many other types of neuromuscular disorders, affecting people of all ages. While most forms of muscular dystrophy occur in babies or children, some others appear in late adolescence or adulthood.

Muscular Dystrophy Foundation of Australia enables state Muscular Dystrophy associations to contribute to an improved quality of life for people of all ages and their families. This results in a better life for clients and loved ones, through a comprehensive approach, from providing the essentials to enabling the realisation of dreams. For more information: www.supportMD.org.au

ABOUT THE CHILDREN’S HOSPITAL AT WESTMEAD

The Children’s Hospital at Westmead is the highly respected, largest paediatric centre in NSW, providing excellent care for children from NSW, Australia and across the Pacific Rim. It forms part of the Sydney Children’s Hospitals Network (Randwick and Westmead).

Established in 1880, The Children’s Hospital at Westmead is a public Hospital and registered charity with 3,000 staff working in 150 departments. 70,000 sick children and their families are cared for each year in a family-focused, healing environment – this includes 29,000 inpatient admissions, 50,000 emergency department presentations and 735,000 outpatient occasions of service.

Funded by the NSW Government, The Children’s Hospital at Westmead provides significant extra services aided by the generosity of individual and corporate donors. For more information visit www.chw.edu.au

Media contact:

Jennifer Daylight

Public Relations, Ph 02 9845 3586

Full Media Release

The course will follow the coast through Wollongong towards the south coast. Our first night will be in the picturesque coastal town of Kiama (116km).

Day two will tackle the Great Dividing Range just 6km from breakfast with the 8km 6.9% average climb sure to get the blood pumping. Once at the top we ride parallel to the freeway, stopping at Goulburn for our second night (154km).

The aim for the final day is deliver an important message to Parliament which is sitting at the time. So after an early departure from Goulburn we plan to complete the 106km to Capital Hill via Bungendore by 2pm.

Detailed rider maps below:

Day One - Sydney to Kiama route map is here

Day Two - Kiama to Goulburn via Bundanoon map is here

Day Three - Goulburn To Canberra map is here

TRIP DETAILS: Sydney to Canberra

DATES: Monday 12 September – Wednesday 14 September 2011

DURATION: 3 days/2 nights

Media:

Canberra Weekly Article - Team Jamie tackles Tour Duchenne

In April 2012, we will be riding from Summit to Sea are looking to coincide with the Thredbo Jazz Festival, dates will be confirmed shortly.

If you have any questions please feel free to contact Frances Lemon by phone 02 9247 0055.

Tour Duchenne Sponsors

Lunch Sponsor

Redbull Wings Team will greet our riders and energise them before they embark

Muscular Dystrophy Foundation (MDF) Australia is pleased to be welcoming back Jerry Lewis to Australia in June 2010 for a tour to promote muscular dystrophy. Jerry Lewis joins us in support of MDF Australia and people throughout Australia with a neuromuscular condition.

• more understanding today through awareness and education
• the best available support through best practise service delivery
• a better future through vital research and essential advocacy

Jerry Lewis’ tour will benefit all Australians with a neuromuscular condition and their families through research, advocacy, awareness and education. MDF Australia is very grateful to those in Sydney and Melbourne who are hosting events with Jerry Lewis as a special guest. The event being planned by Property Council Australia to be held in Sydney still has seats available, please follow the link for more information. Also, look out for Jerry Lewis on Good News Week.

A recent article in The Age newspaper.

An associated article in The Age newspaper.

For further information please contact:

Rebecca Scelly

Media/PR, MDNSW

02 9809 2111

rebecca.scelly@mdnsw.org.au

The competition has started at the Sydney Academy of Sport & Recreation. Round robin competitions to select finalists in hockey, rugby league and soccer take place on Tuesday, Wednesday and Thursday respectively.

The top teams will battle it out in the finals for all three sports on Saturday 20 April.

To download the N.E.W.S. 2010 Calendar of Events please click here.

To download the N.E.W.S. 2010 Fixtures please click here.

Queensland’s inaugural Red Bow March held on Tuesday 31 March was a huge success, raising much needed awareness of the disorder.

Clients, carers, family members, donors, staff and supporters were all dressed in red.

They rallied at Southbank Parklands for a breakfast barbeque and then made their way through the city, marching over the Victoria Bridge and through the Queen Street Mall, before concluding at the City Botanical Gardens with a presentation from MD Australia President Brian O’Sullivan.

MDAQ would like to thank the event sponsors OSD Pipelines for their support.

Thanks also to everyone who marched on the day and the many people on the streets of Brisbane who took the time to learn more about MD during the event.

“On behalf of MDF Australia I would like to express our sincere appreciation and gratitude to the management and staff of PIPEd for their significant on-going support, ” David said on receiving the cheque.

“It is wonderful to see such a fine example of corporate generosity dedicated to improving the quality of life for people with muscular dystrophy and other neuromuscular disorders,” David said.

PIPEd is a unique philanthropic endeavour established by its parent company OSD Pipelines in 2006 to provide quality education to the pipeline industry with profits going to Muscular Dystrophy Foundation Australia.

OSD Pipelines has been supporting MDF Australia for many years.

OSD founder and Managing Director Brian O’Sullivan is chairman of MDF Australia.

To find out more about PIPEd and its relationship with MDF Australia please click here.