Taylors Lakes resident and disability rights advocate Elvira Alic has helped formulate a fundraising campaign for the Spinal Muscular Atrophy Association of Australia. 67089 Picture: DAMJAN JANEVSKI
By Alesha Capone
HOSTING a television show, acting in a play or formulating a campaign to raise funds for a charity, Elvira Alic does it all.
The multi-talented Taylors Lakes resident was diagnosed with Spinal Muscular Atrophy (type two) when she was a young child.
The condition, involving the loss of nerves in the spinal cord, causes progressive muscle weakness and wastage.
Ms Alic, who has an electric wheelchair, has already survived beyond the life expectancy doctors predicted for her.
However, the 24-year-old also gives hope to other people with her condition.
As the marketing and public relations officer of the Spinal Muscular Atrophy Association of Australia, Ms Alic said she was able to combine her two greatest passions.
“One is actually advocacy because I started a degree in social work at RMIT and also marketing because it allows me to be creative, which I like,” she said.
Ms Alic, who also organises media workshops for young adults with a disability and volunteers as co-host of Channel 31’s ‘No Limit’ program, said she planned to return to her studies in the future.
“Just with my condition, it’s degenerative, so I want to work while I can,” she said.
“I’ve learned to live life to the fullest and regardless of what your condition is in life, you can pursue pretty much whatever dream you want and make it a reality.”
Ms Alic and her colleagues at the Spinal Muscular Atrophy Association recently came up with the ‘Take-Away SMA’ campaign.
During August, which is SMA Awareness Month, the not-for-profit group has asked food and coffee outlets to make a tax-deductible donation to their cause.
In return, the charity will provide every business with a week’s supply of coffee cups.
Profits raised from the campaign will go to supporting families living with SMA, research and purchasing three new ‘cough assist machines’ which provide airway support to sufferers.
Apart from the campaign, Ms Alic will take part in a Melbourne University production of ‘A Midsummer Night’s Dream’ in September.
For more information about SMA Awareness Month see www.smaaustralia.org.au or contact 9545 3633.
Elvira Alic is the subject of this week’s Pride in Brimbank, a series Star launched to highlight the remarkable stories of everyday heroes who take pride in their community. If you know someone who fits the bill, contact Star on 9933 4814 or email natalie.gallenti@starnewsgroup.com.au.
