Cystic Fibrosis ACT (CFACT) is calling on all Canberrans to make a difference in the lives of close to 100 local people living with Cystic Fibrosis.
Cystic fibrosis is the most common life-shortening genetic condition in Australia and its impact is significant. Managing cystic fibrosis is lifelong, ongoing and relentless and includes tough physiotherapy regimes and hospital admissions several times a year.
The average life expectancy for someone born with cystic fibrosis is 38, and there is no cure. There is also limited government funding available to assist with the costs of medication and treatment, which can be unaffordable for some, increasing their risk of hospitalisation.
President of CFACT, Tania Minogue, says “We (CFACT) are currently providing support and services to just under 100 people in the region, 63% are adults and 37% are children. Less than 5 years ago these numbers were reversed. It is fabulous to see the CF population ageing but with that comes additional financial challenges.”
“The annual financial impact on a person with CF is a minimum of $3000, but could be as high as $30,000 depending on an individual’s needs which could include vitamins, nutritional supplements, equipment supplies, nebulisers, regular medications and a fitness regime”
“We (CFACT) want to be able to increase the level of support provided to local families by helping them to live longer and healthier lives”
“As a mum of 3 boys, 2 with CF, I understand all too well the difficulties faced everyday by families, trying to juggle treatment, extra physical activity, the financial impact and everyday ‘normal’ life,” Tania shared.
So this year, CFACT is challenging 65 local organisations, service clubs and community groups to take on their own “65 Roses Challenge” and undertake a small to medium fundraising event to support ACT Region individuals and families impacted by cystic fibrosis. The challenge will run from May to the end of July and aims to see many local businesses and schools taking up the challenge to raise $650 for CFACT. Either through donations, creating their own ‘65’ themed challenge or participating in the signature fundraising event for the year: The Santa Speedo Shuffle.
Registrations have opened for the Santa Speedo Shuffle, now in its seventh year, and organisers hope to see hundreds of people strip to their speedos and brave the Canberra winter on Sunday 29 July in support of cystic fibrosis.
The money raised from the 65 Roses Challenge, in particular, the Santa Speedo Shuffle, will help Cystic Fibrosis ACT continue to provide ongoing financial assistance and peer support to people with cystic fibrosis and their families in the Canberra region.
Tania says the 65 Roses Challenge and the Santa Speedo Shuffle aim to bring much-needed awareness to this life-limiting condition and to highlight ways in which Canberrans can help make a difference.
“People with CF face a daily struggle to maintain their health and well-being, but often appear well. With limited awareness among the wider community, it is part of our mission to give those impacted by cystic fibrosis a voice and help ignite understanding of this outwardly invisible condition. “
“We hope that these fun initiatives will help us raise the funding and resources needed to continue our support services. That is why we are encouraging all Canberrans to either participate or donate, which will really make a difference.”
“The money raised through fundraising goes to alleviating the financial and emotional strain on local people with CF of additional CF treatments and medicines. This year the fundraising goal sits at $240,000, which will allow CFACT to increase our support,” Tania said.
Registration for the Santa Speedo Shuffle is free but individuals and teams are asked to focus on fundraising, with a minimum goal of $650.