Research & Advocacy

CF Research

Cystic Fibrosis WA (CFWA) in association with the Australian Cystic Fibrosis Research Trust (ACFRT) funds research to advance our understanding and treatment of cystic fibrosis and to provide better support for those with CF and their families.

Part proceeds of CFWA fundraising events provide a significant contribution to CF research annually. Some of these contributions include PhD Top-Up Scholarships, the Little Lungs Big Futures project and ACFRT approved research projects.

How We Choose What Research to Fund

All applications for research are assessed by an independent scientific advisory committee through the ACFRT. The purpose of the trust is to allocate funds for high quality CF research and secure public and corporate support. This trust is administered free of charge by Cystic Fibrosis Australia.

Since its inception, the ACFRT has funded approximately 100 research projects and 20 PhD top up scholarships. This research, although small scale, often provides researchers with the data they require to apply for large National Health and Medical Research Council (NHMRC) grants.

The PhD Top Up Scholarships firmly establish CF as prime areas of interest in the minds of young researchers as they embark upon their career.

Interestingly one of the research projects funded though the ACFRT was the use of hypertonic saline which quickly became world’s best practice.

CFWA Supported Research

PhD Top Up Scholarships

We know that many of those who are committed to CF research begin these studies early in their careers. We want to help as many excellent young people as possible conduct research projects on cystic fibrosis for higher degree study.

CFWA funds PhD top up scholarship through the ACFRT grant of $12,500 per annum for three years, for students who are conducting research for a higher degree (PhD, MD or equivalent) on a cystic fibrosis research project.

The scholarships are awarded to individuals who already have an award of a studentship and fees, such as an APA, a University post-graduate award, an NHMRC Studentship or equivalent. Applications are welcome from those carrying out laboratory, clinical, allied health or public health projects.

For more information or to apply for a top-up scholarship please contact our Finance and Administration Manager via email (accounts@cfwa.org.au) or on 08 6224 4100.

CFWA Funded PhD Top Up Scholarships

Other CFWA Funded Research Projects

In addition to PhD scholarships, CFWA provides funding for other research projects. All applications for research funding are assessed by an independent scientific advisory committee through the ACFRT.

Our Collaboration with Telethon Kids Institute

Child and Adolescent CF Consumer Reference Group

This group is primarily made up of parents of children with CF. Other representatives include an adult with CF, CFWA, an adult sibling, researchers from Telethon Kids Institute (TKI) and the Perth Children’s Hospital (PCH) CF Centre Director. The aims of the group are to:

• Support the development of partnerships between consumers, researchers, research organisations and clinical staff.
• Provide a consumer perspective to both clinical and research aspects of cystic fibrosis.
• Advise about research and clinical priorities, practice and policies.
• Enhance the quality and relevance of research and clinical activities through consumer participation.

For more information about this group visit the Involving People in Research website.

Evening with CF Scientists

Each May, CFWA and TKI host an annual “Evening with CF Scientists”. A range of speakers showcase cutting edge research, some of which has not as yet been published. This event has continued to grow and for those that are not able to attend is filmed and accessible online.

Regional Evening with CF Scientists

In 2017 we held our first regional research evening in Bunbury. This was generously funded by Telethon and was a collaboration between CFWA and TKI. We provided an overview of CFWA funded research and a CF researcher provided an overview of current research projects currently undertaken by TKI.

Little Lungs Big Futures Research Project

Little Lungs Big Futures was the largest collaborative CF research project ever undertaken in the southern hemisphere, and has its origins in WA. This ground-breaking research project was targeting the reduction of structural lung damage in infants with CF.

Little Lungs Big Futures was led out of the Telethon Kids Institute in Perth. It has collaborators in Victoria, Queensland and the USA.

For further information, please contact Lisa Bayakly, CEO CFWA via email (lisa.bayakly@cfwa.org.au) or on 08 6224 4100.

Clinical Trials

Clinical Trials are an important part of developing new treatments for cystic fibrosis. Cystic Fibrosis Australia (CFA) has developed a Clinical Trials portal with important information about CF clinical trials in Australia, including how you or your child can get involved.

Advocacy

Our advocacy operates on three levels: Individually, assistance for issues around access to services including support letters for residency, funding applications for equipment and access to other programs as required such as leadership camps for young adults.

At a State level CFWA have advocated on behalf of our members for subsidised parking, hospital Wi-Fi and increased staffing levels at the hospitals.

Nationally, CFA has lead various advocacy campaigns which have been contributed to by the State and Territory CF organisations including CFWA. The most recent of these were the subsidised access to Kalydeco and Orkambi. These two medications are the first of a new class of drugs to address the underlying course of the disease and are a quantum leap towards achieving our vision of Lives Unaffected by CF.

Self-Advocacy

Advocacy means standing up for your rights, standing up for someone else, or an issue you see within the broader community. Advocacy could be speaking up about issues that are impacting you in your life or speaking out on a larger scale to help create positive changes in society for many people. It is sharing your views and opinions with others to create change.

Writing a Letter

If you would like to affect positive change, you can write a letter to your local member, or other interested party (e.g., consumer liaison service). We have provided a template below to help guide your letter.

• Advocacy letter template

Where to Send Letters

Parliament websites hold lists of Members’ contact details for their electorate office and Parliament House. Members’ contact details are available in various formats, including mailing labels, and can be downloaded from the URLs below.

• Parliament of Western Australia Members of the Legislative Assembly and Members of the Legislative Council electorate office mailing labels
• Federal Parliament House of Representatives Members’ mailing labels
• Federal Parliament Senate Members’ mailing labels

Advocacy takes time. It can be a long process to create change.  If you do not receive a response first time, follow up with the person you sent the letter to and ask if there is any update or if there is anyone else you should be addressing your letter to.

Complaints

Care Opinion is an independent site where anyone can share their stories about their experience of care. The site covers health and aged care, and community services in Australia, giving service users, their families and carers the opportunity to publish their personal experiences, good or bad, of the care system.

To contact or provide feedback to CFWA click here.

US Drug Development Pipeline

The Drug Development Pipeline is a website you can use to track the progress of drugs through the different phases of clinical research, through to approval by the U.S. Food and Drug Administration (FDA). Please note this website is for the US but provides an insight into new treatment developments.

For information on the drug development pipeline click here.