CYSTIC FIBROSIS COMMUNITY CARE (VIC)
Working towards 'Lives unaffected by cystic fibrosis'


14 Febuary 2018

We've got some incredible supporters out there doing incredible things!

Here at CFCC we are very grateful for everyone who fundraises for us, whether it's a weekend sausage sizzle, running for Great Strides or holding a bake sale. However occaisionally we have some fundraisers who do some really incredible things to fundraise for CF. So today we would like to share with you some of the noteworthy fundraising events that we have coming up in the next month.

SKi 4 CF 

In case you missed it, our fundraising heroes, the Ski 4 CF team will be starting their journey along the Murray River on the 23rd of Febuary. Together they will water ski, the entire length of this iconic river and have so far raised an incredible $50K for CF. Keep an eye out on their page as the team are regularly posting updates on their incredible efforts. https://www.facebook.com/ski4cfevent/ 

Help support their heroic efforts by donating to their fundraising page now

http://ski4cf.com.au/

Cycle 4 CF

This team of go getters have gathered a crew of fellow cycling enthusiasts who are going to cycle from Adelaide to Melbourne! That's a whopping 1,000kms. With over 19 riders and a long list of sponsors, this team have been training hard to prepare for the long ride ahead. Check out their page to follow their journey and to make a donation.

https://www.everydayhero.com.au/event/cycle4cf2018

Peaks 4 CF

You may remember the Peaks 4 CF team from last year. Well they're back and ready to take on a new challenge. This year they are challenging you to join them and climb 4,065m on your bike in March. Riders get a free welcome pack when they fundraise over $500 and complete the challenge.

http://peaks4cf.com/


 

25 January 2018

$3.4m Grant for CF research

Researchers at the Telethon Kid’s Institute celebrated today with the news that they had won a competitive grant from the Australian Government’s Medical Research Future Fund of $3.4m over five years.

Dr Tom Snelling the lead investigator from the Wesfarmers Centre of Vaccines and Infectious Diseases at Telethon Kids, said that this type of clinical trial is the best way to determine which treatments work, and which ones don’t.

Dr. Andre Schultz a member of the research team, said that the grant will be used to support the BEAT CF trial which was seed funded by one of CFWA’s generous philanthropists through the ACFRT.  Dr. Schultz said that success in major schemes like the MRFF depended not only on the quality of the project but also on the applicants' ability to demonstrate substantial progress made towards their goal.

The seed funding provided helped the team at TKI to make progress in developing the platform that they will use as a patient/physician interface for data collection.

Read full article


 

Community Focus Magazine

IN THIS EDITION

  • read about some of the amazing fundraising activities CFCC NSW and VIC have been involved in this year
  • join us as we we say a huge 'thank you' to all our wonderful volunteers, whose tireless support makes our events possibleCommunity Focus magazine December 2017
  • see what our support services team are delivering to our community in 2018
  • meet baby Norah and her family who are representing us this years Christmas Appeal
  • take a look back at 2017 in pictures
  • check out the list of fantastic events we have planned for 2018!

Read more button


What's On

WHAT'S ON ... 2018!

GET READY for an action packed year, with 2018 shaping up as a busy one for CFCC!

We're excited to be providing a wide selection for activities for our members to enjoy and, among other things, will bringing our support dinners to metro and regional locations throughout the year.

And to increase CF awareness in the community and raise much needed funds we have a year crammed with some fantastic fundraising events.

For a taster of what to expect in 2018 check out our Events Calendar and jot down some dates today.

More information about upcoming events will be available shortly ... watch this space!


ORKAMBI ANNOUNCEMENT - 18 AUG 2017

Rest assured we are as equally devastated by today’s PBAC announcement on Orkambi as you are.

Yet again, our cystic fibrosis (CF) community has been let down by the Australian health system. For the third time the Pharmaceutical Benefits Advisory Committee (PBAC) has rejected Vertex’s submission for reimbursement for the CF drug Orkambi.

People with CF in Ireland, the United States of America, France, Germany, Greece and Italy have access to Orkambi. There are 1,000+ Australians with cystic fibrosis waiting for Orkambi and every day they are denied access to this drug is another day of potential life limiting lung damage.

Read the Cystic Fibrosis Australia media release on the Orkambi announcement here.


Carrier Screening: Know Your Options

An estimated 1 in 25 Australians carry the gene changes that can cause CF.

Most are unaware ...

WATCH NOW: Follow this link to watch the videos and learn more

Banner quote about carrier screening

Read more community member stories ...


 

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