Support for the CF community

Cystic Fibrosis Community Care provides a range of programs and services to individuals and families living with CF throughout NSW and Victoria. This includes advocacy, information, education and awareness, community and hospital support, referrals, peer and social support, community events and financial support.

All our programs are available in both NSW and Victoria unless otherwise mentioned. To be eligible to receive our programs and services, you must be a current member of CF Community Care.

Quick links

 

For more details, or to refer yourself or family for any of our services, please contact us on:

Information and public awareness

We provide information about cystic fibrosis to the CF community and raise awareness about CF in the broader community through a range of services and events.

Information line

We provide information about living with CF, social work support and referrals. We work with people who have CF, their families and friends, newly diagnosed families, people who want to know more about CF carrier screening, schools, workplaces, and more.

For more information:

CF carrier screening

94% of children with CF are born into families with no known family history.

To have a child with CF, both parents must be a carrier of the gene changes that cause CF. If both parents are carriers of the CF gene, then with each pregnancy, there is a 25% risk of that child having CF.

Being a CF carrier does not mean you have CF. Carriers usually display no symptoms of CF.

CF carrier screening services are available in Australia to help you find out whether you or your partner carry the CF gene change.

For more information:

Speakers’ program (Vic)

Our team of trained volunteer speakers can share their own knowledge and experience of living with CF with community groups, schools, sporting clubs, tertiary institutions and businesses.

Speakers include adults living with CF, and parents, partners, siblings and grandparents of people with CF.

Presentations are usually 30 minutes in length with additional time for questions. Presentations can be arranged either during the day or outside of working hours. A minimum of three or four weeks notice is required for any presentation request.

A donation of $100 or more to help cover speaker’s travel expenses and support the ongoing work of CF Community Care would be sincerely appreciated.

For more information:

Interclinic (NSW)

Interclinic provides an opportunity for NSW CF specialty clinics to engage with each other to explore and share knowledge regarding the impacts of living with CF. Each year, we have presenters and speakers who can provide new insights and clinical experience to the NSW adult and paediatric teams.

We usually hold two interclinic sessions a year in NSW. However, in 2020, these are on hold for the time being. If you are a health professional and would like more information, please contact us on nswsupport1@cfcc.org.au or (02) 8732 5700.

Advocacy

We recognise the diverse range of issues faced by people with CF and their families, and we provide support with advocacy. CF Community Care advocates for members at a local, state and national level and liaises with other organisations to lobby for improvements for the CF community.

CF Community Care also works one to one with members to provide support for self-advocacy, as well as advocating on behalf of the individual.

We can assist you to exercise your rights and achieve the outcomes you want.  We can help make sure you are not disadvantaged due to any disability, your age, gender, sexual preference or your cultural background. We also have the expertise and experience in handling cases that often affect people living with CF.

There may be times when you feel it is hard to speak up for yourself, so an advocate can help you:

  • clarify what is happening and sort out any confusion or misunderstandings
  • contact the relevant service, discuss the issue and the options for solutions
  • support you to negotiate a complaints process
  • support you at meetings
  • write a support letter.

We can also provide you with advocacy assistance and/or referrals to the appropriate service.

For more information:

 

Practical assistance and social work support

Hospital visits

We regularly make inpatient hospital visits, so if you are an inpatient or planning a hospital admission, please feel free to give us a call so we can come by.

For more information:

Social work support

We provide a range of practical assistance and social work support to our members to help with accessing resources and navigating the health system. This includes:

  • assistance navigating Centrelink, NDIS, housing, and other services and supports
  • short-term counselling and referrals to services for long-term counselling needs
  • case management
  • psychosocial assessment
  • palliative care support.

For more information:

Connect with others from the CF community

One-on-one peer support

Have you ever wanted to speak to someone from the CF community, who understands your situation and just gets it?

Our peer support program provides opportunities for people with CF, their family and carers to have a chat with a trained peer volunteer. Our peer volunteers are members of the CF community, including parents, siblings, grandparents and people with CF. Peer volunteers are available to have a chat via phone or online to share information and experiences, and provide a listening ear.

For more information:

Facebook group for women with CF

Our Facebook group for young women with CF, Sister5Roses was prompted by a group of our young members who were looking for a space to connect online. This group is a place for young women with CF (17+) to connect with others who share a similar journey.

The Sister5Roses group can be joined on request and is a safe place for you to share your stories and hear those of other young women. We invite you to post, comment and share things that interest you… either CF-related or not. We want this online community to be a place where you can drop in for a chat, make new friends, have a laugh and share your views on things that interest you.

Support dinners and events for family members

Each year, we host a number of support dinners across Victoria and NSW. These dinners provide an opportunity for family members to meet others who are, or have been, in a similar situation. They are a great chance to meet new people and catch up with some old friends and share stories, experiences and resources. However, in 2020, these are on hold for the time being.

If you would like to suggest a location for a support dinner in the future, please contact our Programs and Support Services team in your state.

Education support: CF and school

Support for school children and their families

We work with school children and families to ensure that all children with CF can have the best learning opportunities and experiences while managing their CF. We do this through:

  • exploring strategies with parents and children with CF to support their learning
  • collaborating with families, teachers and other educational professionals to find the most effective ways to support children with CF
  • speaking to school staff to raise awareness about CF and the impacts on health and learning
  • providing educational resources and referrals to other services
  • liaising with medical professionals and hospital teachers.

For more information:

Resources for teachers and educators

The CFSmart website provides a wide range of educational resources about CF for teachers, parents and students, including:

  • four free interactive E-learning training modules about CF
  • information booklets and fact sheets for early childhood, primary and high-school-age students, and teachers
  • videos and personal stories about living with CF.

We can also provide support for teachers through:

  • giving CF presentations to staff in school or by video conference or phone
  • discussing individual strategies for working with student with CF
  • providing information about extra educational resources and services.

CF Education Days are run in Victoria by the Royal Children’s Hospital and Monash Children’s Hospital at the start of each school year. These provide detailed information about CF and how to create a CF-friendly environment. For more information, contact education@cfcc.org.au or (03) 9686 1811.

Scholarship Program (Vic)

Our Scholarship Program provides assistance to our members in Victoria who have children (18 or under) with CF, to help cover costs related to their school education or ‘alternate educational pathways’ (such as educational courses, services or equipment). Applications for 2020 close 1 December 2020 (or earlier if all grants have been distributed).

For more information:

CF Study Support: Volunteer Tutor Program (Vic)

Free tutoring program for Victorian school aged children with CF

Tutoring helps students become independent learners, providing them with the skills needed to succeed in school. Tutoring is not just about doing better academically. There are many benefits to working with a tutor, such as improved work and study habits, increased confidence and attitude, or improved social and behavioural skills. Whether your child is falling behind in school due to absences, or they could benefit from further extension, some free sessions with a volunteer tutor may be just what your child needs to help them achieve their best at school. Tutors are available to work in person or online.

Supported by the Jack Brockhoff Foundation

In collaboration with Catch the Clouds.

For more information:

Get your school involved in fundraising

Crazy Hair Day is an annual fundraising event and is a fun way for schools to raise awareness and funds for people living with CF. The official day is 7 August 2020, but feel free to choose a date that suits your school better and go as C-R-A-Z-Y as you can!

Find out more or register online.

Support events

Support dinners and events for family members

Each year, we host a number of support dinners across Victoria and NSW. These dinners provide an opportunity for family members to meet others who are, or have been in a similar situation. They are a great chance to meet new people and catch up with some old friends and share stories, experiences and resources.

If you would like to suggest a location for a Support Dinner later in 2020, please contact our Programs and Support Services team in your state.

Annual remembrance service (Vic)

Held annually in Melbourne, this non-denominational service remembers those people who with CF who are no longer with us. Due to COVID-19, this event is on hold. When it is safe to hold a service, we will extend a warm invitation to you, your family and friends to join us for our Remembrance Service to honour the lives of your loved ones who have lost their fight with CF.

The service includes special readings, time for reflection and the opportunity for those attending to light a candle and place a rose in remembrance. This a special time for the CF community to come together. We welcome all religious traditions and beliefs.

To find out more, contact us on support@cfcc.org.au or (03) 9686 1811.

Financial support with costs of CF

Please note that due to funding arrangements, some grant programs may be once-off programs or may have a closing date. Some funding bodies also require grant recipients to provide certain information such as proof of purchase, so that CF Community Care can acquit the grant. To be eligible to receive grant funding, you must be a current member of CF Community Care.

Physiotherapy equipment program

Our Physiotherapy Equipment Program provides support to our members who have CF and need to purchase essential physiotherapy equipment to help manage their CF.

For more information:

Equipment loan program

Our Equipment Loan Program enables members who have CF to borrow medical and physiotherapy equipment and laptop computers for educational use. Equipment available to borrow includes:

  • nebuliser pumps
  • portable oxygen concentrators (Vic)
  • wheelchairs (Vic).

For more information:

CF-related reimbursement program

Our CF-related Reimbursement Program assists members who have CF and their families by reimbursing some of their CF-related expenses. Applications for 2020 close 1 December 2020 (or earlier if all grants have been distributed).

For more information:

 

Accommodation assistance for regional families

Our Accommodation Assistance Program assists members who have CF and who live in regional areas, so they can have the support of their immediate family while attending appointments or hospital stays in Melbourne or Sydney.

For more information:

You may also be able to access support through state government patient transport assistance schemes, such as Victorian Patient Transport Assistance Scheme (VPTAS) or the NSW Government Isolated Patients Transport and Accommodation Assistance Scheme.

 

Transplant assistance program

Our Transplant Assistance Program provides support to our members who have CF and have recently had a CF-related transplant. This grant aims to help relieve some of the financial stress while people recover and get back on their feet. Applications for 2020 close 1 December 2020 (or earlier if all grants have been distributed).

For more information:

 

CF-related emergency financial assistance

Our CF-Related Emergency Assistance Program provides members who have CF with emergency financial assistance for urgent CF-related needs at times of crisis, during lengthy hospital admissions or following sudden changes of health for people and families on a low income.

For more information:

 

Fitness Participation Program (Vic)

Our Fitness Participation Program provides support for members in Victoria who have CF to participate in the sport of their choice and to help improve lung function and overall health. Applications for 2020 close 1 December 2020 (or earlier if all grants have been distributed).

For more information:

TV hire for hospital stays (Vic)

Our Television Hire Program enables members in Victoria who have CF to have the cost of their television subsidised while they are in hospital for CF-related issues. To obtain the subsidy, members at The Alfred and Monash Medical Centre will need to show their current membership card to the TV company staff when admitted to hospital.

For more information:

Counselling Assistance Program (carers/siblings) (Vic)

Our Counselling Assistance Program provides support to carers and siblings of CF Community Care members in Victoria who have CF who would like to access counselling. Applications for 2020 close 1 December 2020 (or earlier if all grants have been distributed).

For more information:

Carer and Sibling Wellbeing Program

Our Carer and Sibling Wellbeing Program provides support for parents, partners, grandparents, siblings and other primary carers who support someone living with CF in Victoria. Eligible participants may be able to receive a grant to help with the cost of activities that focus on strengthening mental health and wellbeing, improving connections to local community and reducing isolation. Applications for 2020 close 1 December 2020 (or earlier if all grants have been distributed).

For more information:

Scholarship program (Vic)

Our Scholarship Program provides assistance to members in Victoria who have children under 19 years with CF to help cover costs related to their school education or ‘alternate educational pathways’ (such as educational courses, services or equipment). Applications for 2020 close 1 December 2020 (or earlier if all grants have been distributed).

For more information:

 

Need a break or an adventure?

Holiday cabin

We have a holiday cabin for hire to members at reduced rates. The cabin can also be hired out to non-members at regular rates. It can be booked for a maximum of seven nights per stay and bookings can be made up to three months in advance.

The cabin is located in:

  • Corowa: Ball Park Caravan Park, Bridge Road, Corowa NSW 2646
    Maximum number of guests is six (one double bed and two sets of bunks)

For more information:

Happy Family Program

Our Happy Family Program supports members who have a child under 18 years old who has CF, or adult members who have CF and children under 18, to have a day out or escape for a weekend away. Applications for 2020 close 1 December 2020 (or earlier if all grants have been distributed).

For more information:

Simon’s Adventure Fund

Simon’s Adventure Fund has been generously established by Simon Minson’s family. Its aim is to enable people aged 18 years and over who have CF to participate in an activity on their bucket list. It may be something that pushes the boundaries or it may be something that seems a little crazy. Simon was always up for an adventure. He snowboarded, skydived, bungy jumped, shot down rapids, dived with sharks, was a keen trail bike rider, got dangerously close to a brown bear in the wild, loved being behind the scenes at the zoo and played footy against guys twice his size!

He chose to live his life to the full with adventures large and small. Simon died in 2014 from complications due to his CF while on one of these adventures with his mates in Vietnam. Simon’s family want people with CF to live life to the full and so they have established Simon’s Adventure Fund to assist others to experience their own adventure.

For more information:

Take A Break Program (Vic)

Our Take A Break Program supports members in Victoria who are aged 21 years or older and have CF to get away and have a break. The program is generously funded by Andrew’s Legacy. Andrew Carr passed away in 2008, and it was his wish that his family and friends donate money in lieu of flowers to fund the program. Andrew wanted other adults living with CF to enjoy quality time away from the ‘hum-drum’ of life – something he and his wife Melissa found so valuable. Andrew’s family and CF Community Care are grateful to all who have contributed and continue to contribute to Andrew’s Legacy. Applications for 2020 close 1 December 2020 (or earlier if all grants have been distributed).

For more information:

 

Community Conference

Our Community Conference brings people from the Victorian and NSW CF community up to date with the latest developments in the field of CF, and provides opportunities for discussion with medical and health experts and those affected by CF. In 2020, this event has not been finalised yet.