SYDNEY: Children and families affected by neuromuscular conditions will benefit significantly as a result of the $120,000 raised from 2011 Tour Duchenne Sydney-Canberra bike ride completed this week.

“We are very pleased to announce that we exceeded our target and raised $120,000 towards research into a cure for neuromuscular conditions and support services for those affected,” Muscular Dystrophy Foundation Australia CEO, David Jack, said.

“This is a fantastic outcome and one which originally motivated our 23 cyclists to take part in the ride but also kept them pedaling during the 376km journey.”

Riders in the 2011 Tour Duchenne, which began in Sydney on September 12, were primarily family or friends of children with Duchenne Muscular Dystrophy.

The riders received a surprise visit from Federal Opposition Leader Tony Abbott in Canberra yesterday when he joined Tour Duchenne for its final leg from Queanbeyan to Parliament House.

Senator Jan McLucas, Parliamentary Secretary for Disabilities and Carers and Senator Mitch Fifield, Shadow Minister for Disabilities, Carers and the Voluntary Sector hosted the official welcome into Canberra on September 14, for the riders, families and friends are affected as well as The Hon Philip Ruddock MP attended.

“We are very grateful for the support shown by everyone along the way, but particularly the politicians who gave up their time in both Sydney and Canberra to provide encouragement to the cyclists and raise awareness of muscular dystrophy to the broader community,” Mr Jack said.

Mr Jack said plans were already underway for the 2012 Tour Duchenne summit to the sea ride from Mt Kosciuszko to Bondi Beach in March.

Neuromuscular conditions affect 1 in 300 Australians, including carers and immediate family members. The most common of the conditions is Duchenne Muscular Dystrophy, which affects mostly boys who are diagnosed at around the age of 3 or 4. It is a slow and progressive condition and by age 10 most boys struggle to walk, and by 16, they are having difficulty breathing. There is no cure and most boys do not live past their late teens or twenties.

The foundation not only supports ongoing research and the delivery of much needed services to those affected by neuromuscular conditions, but importantly focuses on improving their quality of life through activities such as camps, and social and educational events.

To congratulate the riders, visit www.supportMD.org.au or via the Muscular Dystrophy Foundation Australia Facebook page: Muscular Dystrophy Foundation Australia or on Twitter: MDFoundationAU

Click here to download the full media release.

to the Muscular Dystrophy Foundation Australia from former AFL star Chris McDermott in Melbourne today – Jerry’s first public appearance since falling ill in Sydney last Friday.

“I am absolutely delighted to receive this very generous donation on behalf of the Muscular Dystrophy Foundation – it will make an enormous improvement to the quality of the lives of the Australian children and their families affected by neuromuscular diseases,” Jerry said.

Jerry, the International Patron for the Muscular Dystrophy Foundation Australia, is currently on a two‐week national fundraising and awareness tour for the charity. He has been the National Chairman of Muscular Dystrophy Association, US, for over 60 years and has raised in excess of US$2.6 billion.

Jerry was forced to cancel all engagements on the Sydney leg of his tour as a result of exhaustion. He arrived in Melbourne yesterday and will perform at a sold‐out dinner for 1,300 people tonight at Docklands, with all proceeds going to the Muscular Dystrophy Foundation Australia.

“I would like to thank the many hundreds of people who have sent well wishes from around the world, it has been overwhelming. But the show must go on and I am looking forward to performing in Melbourne tonight to raise awareness and much‐needed funds to help Australian children with muscular dystrophy,” Jerry said.

Today’s $600,000 donation will enable the Muscular Dystrophy Foundation to implement the Little Heroes Child Family Care program that supports children and families impacted by neuromuscular diseases.

“The Little Heroes Child Family Care program aims to fill a significant gap in the provision of essential support and care services to children and their families immediately following the diagnosis of their illness – the program serves to make their journey a whole lot smoother,” Chris McDermott, a founding director of the Little Heroes Foundation, said.

Under the program, the Muscular Dystrophy Foundation will provide a range of options in different states including, physical exercise programs for the children, access to psychological and emotional support for families, assistance accessing essential support and services from government and non‐government providers, and respite, camps and developmental programs including art and music.

“Thanks to the generosity of Little Heroes and Australians, this program will provide significant benefits to the children and families whose lives are often turned upside down once a family member is diagnosed with a neuromuscular disease,” Muscular Dystrophy Foundation CEO David Jack said.

Neuromuscular diseases affect 1 in 300 Australians, including carers and immediate family members. The most common of the diseases is Duchenne Muscular Dystrophy, which affects mostly boys who are diagnosed at around the age of 3 or 4. It is a slow and progressive condition and by age 10 most boys struggle to walk, and by 16, they are having difficulty breathing. There is no cure and the boys are not expected to live past their late teens or twenties.

David said of the 20,000 Australians with a neuromuscular condition, the foundation currently only has the financial resources to adequately support up to 20 per cent of these clients, and their families and carers with its range of services.

“With Jerry’s support, we will educate Australians about the devastating nature of neuromuscular conditions, and in turn help raise sufficient funds to make a life‐changing difference to the other 80 per cent of people who are living with these diseases,” David said.

The foundation not only supports ongoing research and the delivery of much needed services to the clients, and their family and carers, but importantly focuses on improving their quality of life through activities such as camps, and social and educational events.

Click here for the full media release

“We are very pleased to report that Jerry is feeling much better today after spending today and last night resting in his hotel,” Muscular Dystrophy Foundation Australia CEO David Jack said.

“He is extremely disappointed for his fans that he was unable to perform last night, but a combination of a long flight from the US and a busy few days on the start of his national tour led to his exhaustion.”

Jerry has cancelled all further events for the Sydney leg of his national tour, including a dinner at Doltone House in Pyrmont tonight.

He is due to fly to Melbourne next week to fulfil a number of fundraising and media commitments.

Mr Lewis arrived in Australia on Monday 21 June and performed at a gala dinner for 250 people in Brisbane on Wednesday night.

Jerry, 85, was unable to perform in front of a 700-strong audience last night and was seen by a doctor, but was not hospitalised.

“We were overwhelmed by the positive reaction from people who attended last night’s show – they gave Jerry a standing ovation when it was announced he was unable to take the stage and many have elected to donate their ticket costs to the charity rather than seek a refund,” Mr Jack said.

Jerry is the international patron of the Muscular Dystrophy Foundation Australia and has donated his time to undertake the national fundraising tour in aid of the charity. Neuromuscular diseases affect 20,000 Australians, or 60,000 people including carers and immediate family members.

“Jerry does a remarkable job in raising awareness of neuromuscular diseases and funds for the Muscular Dystrophy Foundation which enables us to make a meaningful difference to the lives of those people impacted by these insidious diseases,” Mr Jack said.

Jerry has been the National Chairman of Muscular Dystrophy Association, US, for over 60 years and has raised in excess of US$2.6 billion.

Click here to see the media statement.

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.