21 September 2020

Gastrointestinal specific funding scheme for CF research

We have some very exciting news to share with you.

Through your ongoing support CCF has been able to fund Australia’s first gastrointestinal-specific funding scheme for CF research with the first grant recently being awarded.

The winning submission for the inaugural $50,000 grant is a promising one.  Put simply, the project will examine gut inflammation, and the microbiome, and hopefully lead to the development of personalised treatments such as CF-specific probiotics.

The study is vital because both inflammation and poor microbiome health in CF are linked to poor growth, GI symptoms and increased cancer risk.  Despite these common complications in our community, no GI-specific therapies for those with CF currently exist.

As part of the study, stem cells obtained from gut biopsies from people with CF will be used to grow 2D and 3D organoid culture systems which aims to replicate real life (“mini guts”).

Lead researcher Associate Professor Keith Ooi said the study was a crucial step towards personalised therapies. “Successful personalised therapies would revolutionise CF treatments and other conditions subject to host-microbe interactions,” he said.

Prof. Ooi said there needed to be a more significant focus to be placed on GI clinical care and research and thanked the supporters of Conquer Cystic Fibrosis for making this grant possible.  “Historically gut issues were the primary cause of death in children with CF,” he said.  “The introduction of pancreatic enzymes and a high-fat and high-calorie diet played a vital part in enabling people with CF to live long enough to develop lung disease, which has become the primary cause of death.

“Understandably, the research focus has been focussed on the lungs in recent decades and CF-specific gastrointestinal research has taken a back seat.  “However, as the CF community well knows, gastrointestinal issues are vast, serious, life-limiting and at times embarrassing.”  As well as suffering from minimal research focus, Prof. Ooi said there was also a need for more gastrointestinal physicians to be embedded in CF clinics across Australia.

This is something Cystic Fibrosis Australia, our state organisations and our community can continue to keep in mind and lobby for in coming years.

Thanks to research, people with CF are living longer but it’s vital we keep investing in research to combat the vast array of complications this disease throws at us.
This grant is being delivered by the Australian Cystic Fibrosis Research Trust.

We would like to extend our heartfelt thanks to the team at Cystic Fibrosis Australia for the vital support they have provided in making this research a reality.

Pictured below is lead researcher, Associate Professor Keith Ooi.

17 September 2020

Forrest Family Foundation supporting CCF

It’s been a tough year for the community and unfortunately this has had a significant impact on funding for research.

Despite having to cancel our major fundraising event for the year and a number of others, we are incredibly fortunate to still have generous donations coming in from our loyal donors.

Today we would like to thank the Forrest Family Foundation. We are so grateful to be able to keep the funding flowing to our dedicated researchers this year to ensure the beautiful young people living with Cystic Fibrosis get the chance to live life to the full with the dream of them growing old doing so.

From everyone at CCF we thank you so much for your generous support.

22 August 2020

Dare to Care – Take Your Breath Away Swim

On 22 August 2020 swimmers braved the cold to raise funds for vital Cystic Fibrosis research.

Thirty brave souls plunged into the 13 degree waters at Matilda Bay. They certainly reported their breath being taken away – a feeling the 3400 Australians with Cystic Fibrosis face each day.

Through their amazing efforts a total of $28,640.00 was raised from the event.

This money will ensure vital funds will go directly to Australian Cystic Fibrosis research.

This year our charity has had to cancel our biggest events so this result means the world to us, especially for the families that live with this disease every day.

Thank you to each and every one of you that participated in and made this event possible.  Heartfelt thanks especially to event organisers Gary and Caroline Claydon who put together another fantastic annual event which is now in its third year!!

All the money raised from the swim will support vital CF research.

Entertainment Book Double $$ to CCF

Entertainment Membership

Have you bought your 2020/2021 Entertainment Membership?

Buy a membership today to receive heaps of great deal, plus for a short time, Conquer Cystic Fibrosis will receive double the usual funds!

Don’t delay purchase yours today!!

 

Bingo is back!!

Bingo for Conquer Cystic Fibrosis is back!!

Over the next few weeks (until we get over this intial Covid-19 ease of restrictions) the Bingo team will be selling bingo books and flyers at the following prices at all bingo centres:

Bingo books – $4.00 each
Flyers – $2-00 each

This will increase the prize money and hopefully attract a few more people to each of our bingo nights.

It is important to Peter and all the Bingo volunteers for you to feel comfortable and confident in coming along each night in these unprecedented times.

When the next phase of restrictions is lifted and more people come along each night, the pricing will go back to normal.

Will it be you that walks away a big winner???

Bingo is held three nights per week at the following venues.

Wednesday night – VASTO CLUB – BALCATTA
Friday night – OLYMPIC KINGSWAY SOCCER CLUB
Monday night – MIDLAND SPORTS COMPLEX

Eyes down at 7-30pm
Doors open at 4-30pm

We hope to see you all back at Bingo soon!

We need your support!

2020 Grand Ball Appeal

On Saturday 20 June 2020 the Crown Perth Grand Ballroom would have been filled with a sell-out crowd of 700+ guests for the 17th annual Capel Vale Conquer Cystic Fibrosis Grand Ball.

The cancellation of the 2020 Grand Ball has been a huge blow for our volunteer-run charity which funds vital Cystic Fibrosis research projects.

Today we are appealing to those who had planned to attend our Grand Ball to donate!  This could be a portion of the $220 ticket price or what you may have spent attending the event.

We know that times are tough for many at the moment but we need your support to keep the funds flowing to the researchers.

We have committed to funding research with numerous organisations including the Telethon Kids Institute, Institute for Respiratory Health and the Australian Cystic Fibrosis Research Trust (ACFRT) through Cystic Fibrosis Australia.

We are committed to ensuring this vital research can continue.

Please click here to watch a clip of our beautiful ambassador Jackie Fraser speaking passionately about our cause. Jackie has reached end-stage Cystic Fibrosis and wants much better for the children who come after her.

To make a donation please click here

With your help we can Conquer Cystic Fibrosis…

Capel Vale Wines throws its support behind Conquer Cystic Fibrosis yet again!

Capel Vale Wines has thrown its support behind our cause yet again!

So please, fill your wine racks and your glasses.

Despite their own challenges in recent months, Capel Vale Wines, and the Pratten family, knew that the cancellation of the Capel Vale Conquer Cystic Fibrosis Grand Ball would be a huge blow to our fundraising efforts this year and they wanted to do something to continue to support us.

So, during June, 10% of the sale of each Capel Vale case sold online will be donated to Conquer Cystic Fibrosis to help us continue to fund the research needed to find a cure.

Simply use the coupon code CF2020.

Capel Vale CEO Simon Pratten said whilst many businesses were hurting, Western Australia was in an enviable position around the world.

“Capel Vale is proud to have supported the Conquer Cystic Fibrosis Ball for 17 years and feel that now more than ever those with CF need all the support they can get,” he said.“This is a cause close to our hearts and this is a charity fuelled by a passionate team of volunteers who deserve our support to continue.  It’s been a decade since my sister, Sally, passed away from CF and the social isolation standards imposed by the government brought back memories of self-imposed isolation when I had a cold or the flu in order to protect her”.

“Covid 19 has brought to light the impact that disease can have on lung function and how living with partial lung function and other complications is so debilitating. We want to support the researchers who are working hard to improve lives and ultimately, find a cure for this devastating disease.”

Don’t miss out click here to order yours today!

Pictured below is Conquer Cystic Fibrosis Ambassador Jackie Fraser and Capel Vale Wines Business Development Manager Jonathan Loxton.

 

$50,000 donation kick starts global developments in CF care

Research of global significance is well underway here in WA and that is all thanks to your generosity!

We are thrilled to announce that we recently handed over $50,000 to the amazing CF research team at the Telethon Kids Institute. Those funds will fund an exciting Artificial Intelligence project which has the potential to drastically improve CF care worldwide.

We also received an update on the $20,000 we granted to the Institute last year which kick started an international collaboration of experts looking at a new molecular method which detects Aspergillus. It does so by looking for its DNA samples taken during a bronchoscopy. That project is showing immense promise and Dr Luke Garratt is leading this work with collaborators in Singapore who are now contributing more than $80,000.

For those who may not be aware, Aspergillus is the main fungus cultured in the airways of patients with CF and it is associated with airway damage and lung function decline.  Better detection leads to quicker and more effective treatment to reduce the damage this fungus inflicts.

The delivery of these funds and the success of the Institute’s research so far is great news for the 3300 Australians with Cystic Fibrosis.

One of those is 4-year-old Connor Barrett (pictured) whose future looks much brighter thanks to the clever minds and dedication of the Telethon Kids Institute team.

He is pictured with Development Manager Erin Hurson and world-renowned researcher and clinic Professor Stephen Stick to celebrate the big leaps forward.

However that’s not where the Conquer Cystic Fibrosis  contributions stop.

This year we are also granting funds to the Institute for Respiratory Health ($200,000), the Australian Cystic Fibrosis Research Trust ($100,000), Cystic Fibrosis WA ($10,000) and purchasing a state-of-art Ex Vivo Lung Perfusion machine which will improve the safety of transplants at Fiona Stanley Hospital ($280,000). More updates to come on those donations.

We are incredibly proud of these achievements considering we are a 100% volunteer-run charity started only 16 years ago right here in WA.

Thank you for making a difference.

Saturday 18 May 2019

A very BIG Thank You!

THANK YOU!!!

To everyone who attended to the Capel Vale Conquer Cystic Fibrosis Grand Ball 2019.   As a result of your support and all of our generous donors, we raised an incredible $197,426.73 (profit) on the night!

  This brings the total raised by Bingo for CCF, all other CCF related fundraisers and donations in the last 12 months to an incredible

$496,924.66 

(Profit!!)

This means we will be able to purchase the Ex Vivo Lung Perfusion machine immediately!

Because we are a 100% volunteer run charity, it also means we will be able to continue grants of over $200,000 to the Institute for Respiratory Health, the Telethon Kids Institute, the Australian Cystic Fibrosis Research Trust and CFWA for vital Cystic Fibrosis research and services again this year.

From the bottom of all our collective hearts at CCF – THANK YOU to everyone who is supporting us to Conquer Cystic Fibrosis

 

4 May 2019

Let the bidding begin!!

The auction site for all items available at this year’s Capel Vale Conquer Cystic Fibrosis Grand Ball is now open!

You don’t need to be at the Ball to bid and win – simply log on and start bidding.

It is quick and easy. Click on the item you are interested in and place your bid. If you are out-bid, you will be notified by text!

We have everything from extremely rare and limited Aboriginal art by internationally acclaimed Aboriginal artist “Wadgee” Sheila Humphries, to Capel Vale Wines, accommodation (in Dunsborough, Geographe Bay, Myalup, Malayisia and Dubai), restaurant vouchers, jewellery, kids’ toys, Eagles and Dockers memorabilia, and a 10Kg block of chocolate. There is definitely something for everyone!

Bidding is available from now until 11pm on the night of the Ball (18 May 2019).

Don’t miss out! Log on and start bidding now!