b78aae812502f001d40a869e557ce154.jpg

SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

 

2018 07 zoe watsonSMA Australia will host the inaugural SMA 24-Hour Challenge to raise much-needed funds to support Australians living Spinal Muscular Atrophy (SMA), which is the leading cause of death for infants under 2 years-of-age on Thursday, August 30.

SMA Australia provides information and support services to people living with SMA which empowers and assists people throughout their SMA journey. The Cough Assist Program, and the Wellbeing Program, are a major focus of support for many SMA families.

Zoe Watson was diagnosed with SMA when she was just 3-years-old. SMA is very similar to Motor Neuron Disease (MND) but afflicts children and can carry on into adult life. The disease can also affect adults without warning.

Zoe, now 23, used to call the disease her ‘thingamajig’ when she was young and is encouraging everyone to get behind the worthwhile cause. Every donation will be quadrupled on August 30.

People with SMA are not able to stand or walk unaided and can suffer breathing and feeding difficulties as well as hand tremors.

Zoe, from Everton Hills, has overcome many challenges since being diagnosed with SMA. “Since being diagnosed at such a young age, I cannot remember life without it but I’ve never wanted it to stop me from doing anything,” Zoe said.

“When I was younger my walking ability kept decreasing eventually to a point where I could barely stand. In 2009, I had to have scoliosis surgery. Walking no longer became an option for me,” Zoe continued.

“I’ve embraced lots of opportunities throughout my life and SMA has never dominated my experiences. I love to sing and perform so I always jumped at the chance to be in high school musicals. They even wrote special characters for me so that it fit into the storyline!” Zoe said.

Spinraza, a medication that dramatically improves motor function for people with SMA, was approved by the Pharmaceutical Benefits Scheme (PBS) in May 2018, but the Federal Government announced that it was only available to patients under the age of 18.

SMA Australia CEO Julie Cini believes that everyone should have access to Spinraza, which can cost up to $125,000 per dose. “It dramatically improves their motor control functions and would dramatically improve their livelihoods. The Federal Government has done an incredible job to make the drug accessible to children but more needs to be done for adults,” Julie said.

“I hope that adults like me will have access to the drug as we are all deserving of a better future,” Zoe said.

Julie, who has been leading the fight to place Spinraza on PBS for years, is also encouraging adults with SMA to register to their database so the government can get an accurate number of Australian adults living with SMA so it is appropriately funded early next year. To register please visit: http://smaaustralia.org.au/support-services/sma-patient-registry.

“I encourage everyone to get behind our 24-Hour Challenge that will help us in our work that supports Australians living with SMA and their families,” Julie, who lost two children to the fatal disease, added.

“SMA has impacted my life in both good and bad ways. I have learnt to think outside the box and I’m able to overcome almost anything that I put my mind to,” Zoe said.

To quadruple your impact please make a donation to SMA’s 24-Hour Challenge on August 30 by visiting: www.smaaustralia.org.au.