Canberra monuments lit up red for 65 Roses Day on Friday, highlighting cystic fibrosis, a debilitating disease that affects about 100 Canberrans.
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Old Parliament House and Malcolm Fraser Bridge lit up from 5.20pm to show the capital’s support for the national awareness day.
65 Roses Day is part of a month-long national campaign, the 65 Roses Challenges, that raises funds and awareness for cystic fibrosis.
Cystic fibrosis is the most common life-shortening genetic condition in Australia. It impacts the whole body, including the respiratory, digestive and reproductive systems. The flow on effects include malnutrition and mental health issues.
A child born today in Australia with cystic fibrosis has a life expectancy of just 38 years. There is no cure, only treatment.
Treatment for the illness is daily and as the condition progresses, becomes more intense. It is ongoing and relentless, there is no time off.
There are limited government funds and programs for cystic fibrosis, so CFACT provides support and services to just under 100 people in the ACT region, 63 per cent of them are adults and 37 per cent children. Less than five years ago these numbers were reversed.
CFACT president Tania Minogue says it is great to see the cystic fibrosis population ageing but knows that it comes with additional financial challenges.
“The financial impact on a person with CF is about $3000 each year but could be as high as $30,000 depending on someone’s needs, which could include vitamins, nutritional supplements, equipment supplies, nebulisers, regular medications and a fitness regime,'' she said.
“Managing treatment can become unaffordable for some without PBS support or the Health Care Card, increasing the risk of hospitalisation and more rapid progression of the condition. It is a relentless, all-consuming condition that needs real recognition and support at all levels of government.
“Without that government support, CFACT needs to increase the level of service we provide to local families to help them live longer and healthier lives, but we can’t do it without the help of the Canberra community.
“This year our 65 Roses Challenge includes getting 65 teams to participate in the annual Santa Speedo Shuffle on Sunday, July 29.
“Anyone comfortable with wearing speedos in the Canberra winter is encouraged to register and fundraise. If that doesn’t sound like you, there is still time to do your own 65 Roses Challenge.
“With the challenges running until the end of July we are looking forward to being able to announce that $240,000 has been raised to support the CF community in the ACT region,” Ms Minogue said.
To support CFACT’s 65 Roses Challenge, head to everydayhero.com.au/event/65roseschallenge-act18 or www.santashuffle.org.au
