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Orkambi Approved by FDA in US
BREAKING NEWS Overnight the U.S. Food and Drug Administration's (FDA) approved Orkambi, for people with cystic fibrosis (CF) homozygous for the F508Del CFTR mutation who are aged 12 years and over.
Click here for more information. |
Can You Help Us Reach Our $15K for Swan River Run?
Sunday July 26th
 Last chance to get your FREE entry to the Swan River Run, we need your help to reach $15K!
Click here to sign up now.
For more info contact Shelley on 9346 7333 or via email. |
Hope for Small Molecules
There is an update on a new trial being run in the US by Nivalis Pharmacuticals.
Nivails’ trials will initially target people who are homozygous of (have two copies of) the F508del-CFTR mutation or the F508gdel mutation.
Click here for more info. |
Airway Clearance Update: The Vest
There is an update regarding the use of "High Frequency Chest Wall Oscillation" (HFCWO) vest for airway clearance in cystic fibrosis patients.
Click here for more info. |
Update Your Details Including Genotype
We are moving to a new database that will help us deliver services in a more sophisticated manner, including recording information such as CF Genotypes that will help us target people directly for drug trials relevant to them.
If you have changed your contact details or if you would like to update your membership with more information (including your genotype if known), please fill out our new membership form online here.
This is via a secure web link to keep your personal information safe, so please give the page a few seconds to load. |
CFfit Exercise Resources
Have you seen our CF Fit resources? This set of 3 booklets is designed to support and motivate people with CF to safely exercise at home or in the community. The booklets include:
- A Guide for People with CF (CF specific benefits of exercise)
- A Guide for Personal Trainers (CF specific benefits of exercise and exercise considerations for people with CF)
- My Exercise Record (personal goals & precautions, exercise prescription and log pages)
These resources are available for download on the CFWA website here, or hard copy booklets can be mailed out to members. They are suitable for people 12 plus. Contact Gillian via email.
CFWA also have exercise equipment available for loan. We have bikes, treadmills and rowing machines available. If you wish to loan a piece of equipment please contact Sam Wallace via email. |
CF Conference
Lay program 15th - 16th August 2015
The 11th Australasian Cystic Fibrosis Conference in Sydney is fast approaching.
Click here for more information, and to sign up. |
Coffee Morning Mandurah
Come along and meet CFWA staff and other members who live close to your area, and enjoy a coffee and cake (our shout).
When: Friday 31st July 10am-12pm
Where: Dome Café, 73 Mandurah Terrace, Mandurah
RSVP: to Gillian on recreation@cysticfibrosiswa.org or 9346 7338 at least 1 day prior. |
Good Luck Ben!
On Sunday 5 July, Ben Younger will take on the gruelling Gold Coast Marathon to generate awareness about cystic fibrosis and raise much needed funds and has raised over $6,000!
If you would like to make a donation and help to encourage Ben over the finish line, you can do so online here.
Good luck Ben! Thanks for waving the flag for CF! We look forward to seeing hearing the result and seeing photos of you crossing the finish line! |
Entertainment Books in Stock
Entertainment Books are back in stock at the office.
Come and pick one up or buy online and have it shipped right to you. |
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