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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

2018 07 tyren edwards

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

SMA Australia provides support services to people living with SMA which includes their lifesaving Cough Assist Program, their Wellbeing Program, and they also offer palliative care.

SMA is very similar disease to Motor Neuron Disease (MND) but afflicts children and can carry on into adult life. The disease can also affect adults.

Since being diagnosed with SMA when he was a year-old, Tyren Edwards fought against SMA daily that slowly took away his ability to walk. Growing up he had many falls, which resulted in two serious fractures to his back, and a badly broken femur. He is now permanently in a wheelchair.

Tyren now, 44, is a proud father of two children, and works as the national chief scientist at one of the biggest drugs of abuse testing laboratories in the country. “I’m proud to be able to show my girls Keely and Isla that anything is achievable if you try hard enough,” Tyren said.

“I really would love it if there was something out there for adults with SMA to help in improving the quality of life. I want my girls to have an active Dad as possible,” Tyren added.

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

“I have been waiting for something like this that supports adults with SMA for years,” Tyren said.

SMA Australia CEO Julie Cini believes 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.

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 further help us in our work that supports Australians living with SMA and their families,” Julie, who lost two children to the fatal disease, added.

“I really hope that there will be support and funding for adults like myself and that we can have an improvement in our quality of life,” Tyren added.

To make a donation to SMA’s 24-Hour Challenge on August 30 please visit: www.smaaustralia.org.au.