Cystic Fibrosis (CF) is a genetic condition that is recessive. The gene that is involved in Cystic Fibrosis gives orders for the cells to create controlling salt movement in and out of the body cells. This specific salt transport gene is found on chromosome 7. Everybody got 2 copies of chromosome 7 and consequently we all have 2 copies of this salt transport gene. Medical scientists have termed this the Cystic Fibrosis Transmembrane Regulator (CFTR) gene.
Cystic Fibrosis South Australia (SA) offers support, advocacy and activities to the South Australian cystic fibrosis community. Fibrosis community (CF) is a widespread and most common type of genetic disorder having a fatal ending. Primarily it affects the human lungs and the entire digestive system. It places heavy physical and financial demands on the carers and parents.
Fundraising Goals:
- Family respite services
- Research into CF
- Support towards Families having Newly Diagnosed CF Children
In Patient CFSA Services
Being in hospital can sometimes be lonely and a bit dull. Cystic Fibrosis South Australia (SA) can offer to visit hospital inpatients on request as they’re in the hospital. CFSA is also providing inpatients with Boredom Buster Bags and Time Blast’r bags to ease boredom during the period of their hospital stay.
CFSA got a laptop having wireless internet connection available for usage by inpatients in RAH and WCH. CFSA Members who are RAH inpatients can get financially reimbursed for a portion of the cost of the TV rental.
CFSA Equipment Hire
Cystic Fibrosis South Australia (SA) got some equipment accessible for hire or loan which includes travel nebulisers, 2 exercise bikes and physiotherapy tables. They also got a Medics Wold Traveller pump, a Freeway Freedom pump and 2 Pari Mobile S nebulisers that are available for purposes of hire and are compact and light having a battery pack making them ideal for travel abroad. These are obtainable for loans by adults and kids having CF that are financial members at a deposit of $50 that is refundable and a small fee monthly.
CFSA is grateful to the Crows Foundation that has donated the 2 Pari Mobile S nebulisers and also for giving support to persons in South Australia having Cystic Fibrosis.
CFSA is also appreciative that the medical costs and physical effects linked to having a chronic illness like CF could become a devastating burden to the affected individual plus their family; hence, they are providing a variety of subsidies to persons having Cystic Fibrosis plus their families towards helping with the costs for maintaining wellbeing and health.
The subsidies for all members include:
- Equipment cost for physio tables and nebulisers
- Emergency Financial Assistance –for critical services like water, electricity and telephone bills.
- Transplant assistance for relocation and for those living interstate during their lung transplantation plus period of recovery.
While Cystic Fibrosis South Australia (SA) tries to help members as far as it could, there are certainly limits on the money amount for every subsidy that can get accessed by the members yearly and several of the subsidies have also got eligibility requirements that the members have to meet in order to be able to access the service.
Parents & Carers Support
Being a carer for or the parent of a person having CF is an extremely demanding role that entails making sure medications and treatment are adhered to, promoting the welfare of your child and of course just having a great time with them. Cystic Fibrosis Southern Australia recognizes these challenges and purposes to back carers and parents with a variety of supports that would include resources and information on CF and latest happenings, mum’s/dad’s days out, network support (connecting parents with others in similar situations), giving regular parent dinners and coffee gatherings for recently diagnosed among many other engaging activities.
Getting Involved
Events
There are lots of methods through which you could have fun whilst at the same time giving your support to Cystic Fibrosis Southern Australia. CFSA convenes an assortment of fundraising events during the whole year. Also they got lots of amazing supporters who arrange fundraising events in the community and you are invited to take part in any manner you decide.
The South Australian communities of generous supporters are helping in running numerous community fundraisers during the entire year. CFSA sincerely thanks all those who are helping towards promoting and fundraising for the Cystic Fibrosis cause.
Fundraising
Cystic Fibrosis Southern Australia is an essentially a community based organisation getting no funding from the government. For that reason it depends on you to make sure that it will go on providing support to the people and community. It carries out several events yearly towards raising awareness and funds so that they could continue providing these vital services. An unbelievable way of promoting your individual event and raising money and donations online is by your own individualized webpage.
Other ways of giving support to CF include:
- Become a member
- Volunteering
- Supporting special events
- Corporate giving
