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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

2018 07 powerhockey

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 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 she was 3-years-old, Chantel Bongiovanni didn’t know the words or have the education to understand what the fatal diseases was. When she was 8-years-old she suddenly couldn’t walk around her house anymore and by 12 she got her first electric wheelchair.

Chantel, 28, from South Australia, is now studying for a PhD, working part-time, volunteering, and is actively participating in her community. She is encouraging everyone to get behind the 24-Hour Challenge. “It can be exhausting to fight against a body whose capacity is always changing. There are days where most of my energy is spent trying to keep my body going amidst that change,” Chantel said.

In September, Chantel will be representing Australia in World Powerchair Hockey Championship in Italy with her brother, Santo, who also has SMA. “It’s an incredible opportunity, to travel to represent your country and then to compete on the world stage. As far as I know I’m the first female Australian representative in the sport, and its not just about playing in Italy, but encouraging and inspiring the next generation of people with disability to take up competitive Powerchair sport in Australia,” Chantel said.

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.

“Having access to Spinraza would mean that I no longer would have to fight the little things as hard and that I can take on the bigger things in my life. Spinraza would make management of the progression of SMA that much easier,” Chantel said.

SMA Australia CEO Julie Cini believes anyone affected by SMA 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.

“Spinraza has the chance to rewrite the narrative of loss for so many adults with SMA,” Chantel added. “It could literally change the course of my life and the lives of so many other adults too.”

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