CF in Townsville

~ Trikafta for ages 2-5 submitted to TGA!! ~

Overnight it's been announced that the FDA (US) has just approved Trikafta for those aged 2-5 and excitingly for those in Australia, it has also been submitted to the TGA!

The TGA website confirms that the 2-5 year old application was accepted in February. With this process taking approx one year, it is likely that the earliest possible PBAC meeting could be March 2024. Exciting progress for the young ones with CF!

Read more about the US approval here:
https://investors.vrtx.com/news-releases/news-release-details/vertex-announces-us-fda-approval-trikaftar-0

Fantastic news...

Trikafta will be available from May 1!

The best news to wake up to for the 500+ families who can dream of a new future thanks to this amazing medication!

Thank you to everyone who made this happen, from Mark Butler MP & Vertex Pharmaceuticals, to the CF Associations and the whole community who got behind the campaign, particularly those who shared their stories.

! !!

A huge THANK YOU to the Grand Hotel and Apartments Townsville for your donation today of $4,000. This will greatly assist our charity "Supporters of 65 Roses Inc", providing funding for vital equipment for young people affected by cystic fibrosis in our local community. Heartfelt thanks go to management & staff, and also to the guests for supporting the ‘Eco Stay Program’. 🌹
CF in Townsville

We are very proud to be able to present the local Townsville charity Supporters of 65 Roses much needed funds raised through our Eco Stay programme.

Supporters of 65 Roses are committed to improving the quality of life for children and young adults suffering from Cystic Fibrosis in Townsville and regional areas. There is no cure for CF and the current life expectancy is just 37 years.

WE'D LOVE FOR YOU TO JOIN US
Come on down to the North Shore Skate Park for the Townsville Skateboarding Championships today Sat 7th May.

The action starts at 12:30 and finishes at 5pm.
It will be a wonderful afternoon of skateboarding, all the while raising much needed funds for our charity.
(the competitor entry fees are kindly being donated to our charity).
We have a raffle at the event fundraising for our charity.
A big thank you to the Grand Hotel and Apartments Townsville for donating a gift voucher for a 1 brm premier apartment for 2 nights for the raffle.
https://www.nqgames.com.au/event/skateboarding/
Inaugural Josh Solomon Cup!

Skateboarding – 2022 NQ Games

WE'D LOVE FOR YOU TO JOIN US!!!

Please come down to the North Shore Skate Park for the Townsville Skateboarding Championships on Sat 7th May 2022 from 11am-5pm for the inaugural Josh Solomon Cup!

It is set to be a wonderful afternoon of skateboarding, all the while raising much needed funds for NQ cystic fibrosis charity - Supporters of 65 Roses Inc.

All competitors entry fees will be donated to our charity, plus there will be a raffle held at the event. Any volunteers who would like to help sell raffle tickets on the day please contact Glenys on 0400 179 728.
Hope to see you there!

https://www.nqgames.com.au/event/skateboarding/

Skateboarding – 2022 NQ Games

We are so thankful to Health Minister Greg Hunt for his work in having this listed on the PBS.

Landmark PBS listing for Australians with cystic fibrosis Australians with cystic fibrosis will soon have access to a new treatment following the listing of Trikafta® on the Pharmaceutical Benefits Scheme (PBS).

Letter from Vertex..

Open letter from Vertex

TRIKAFTA will be listed on PBS 1st April for people with CF 12 years and older who have at least 1 delta F 508 gene

https://www.canberratimes.com.au/story/7674533/magic-fairies-and-miracles-life-changing-medication-to-be-listed-on-pbs/

'Magic, fairies and miracles': Life-changing medication to be listed on PBS "The difference from how I was to how I am is chalk and cheese," says one cystic fibrosis...

THE TIME IS NOW:
Help CFA get as many signatures as possible on this Trikafta Petition: We have only FOUR WEEKS to go until it is presented at Parliament House!
Help us make sure that Australians get Trikafta as soon as possible
https://www.aph.gov.au/e-petitions/petition/EN3915

Please sign the PETITION. Important - don't forget to confirm your signature via email. Please share this post and the petition.

Trikafta was recommended for listing on the PBS on 28th Jan but…
Vertex (drug company) and the PBAC (Pharmaceutical Benefits Advisory Committee) are still negotiating and its been going on for a year. We are calling for an end to this agonising wait. People are dying while the decision makers squabble over money in Canberra. We need access now. We need parliament & the health minister Greg Hunt to get this access underway! Trikafta is the most effective CF drug on the market with the best symptom reduction for the most CF patients.

Take it to the House!
This is a link to the offical APH Petition for expediting Trikafta. Sign this petition to make sure Trikafta is fast tracked to Australian homes.
https://www.aph.gov.au/e-petitions/petition/EN3915

CF in Townsville updated their business hours.

CF in Townsville updated their info in the about section.

🎅🎄🎁 Wishing everyone a very Merry Christmas and a happy and healthy 2022.
Thank you for your support :)

media1.tenor.co

Thank you to the Grand Hotel & Apartments Townsville & guests for your wonderful support, what a milestone!
We are very grateful 😀
These funds will provide essential equipment & support to children & young adults affected by Cystic Fibrosis in our local community.

Today we reached the $2000 milestone in our fundraising efforts for The Supporters of 65 Roses here in Townsville.

These funds will help young ones in our community suffering from CF to breathe a little easier.

Thank you to our guests that support this initiative though our Eco Stay Program.

Thank you, this is fabulous...

We have reached $1000 raised for the Supporters of 65 Roses who help kids living with cystic fibrosis through our Eco Stay program. Thank you to our guests that support this initiative.

Meet 9 year old Amani (centre). She is beautiful and smart and has Cystic Fibrosis. This is a genetic disorder affecting the lungs and the digestive system. Everyday to keep healthy, Amani takes up to 20 tablets, undertakes physio, physical exertion and a nightly nebuliser.

FTFWC choose CF in Townsville as a recipient of our 21st Birthday Charity Giveaway. This is a local group that provides support and life saving equipment to children and young adults with Cystic Fibrosis in Townsville.

Information about Adult CF Centre - Prince Charles Hospital.
Please share....

🌹 Thank you to the East Ayr State School for raising community awareness about CF & for fundraising for our charity with a Crazy Hair Day!
@ East Ayr State School

Sign the Petition Trikafta Australia: The Cystic Fibrosis game changer.

Vertex has contacted our charity "Supporters of 65 Roses Inc" and provided info about the deferral of funding of Trikafta on the PBS. Our representatives will be having a Skype meeting with Vertex shortly.

Greg Hunt MP

We are saddened to hear of the tragic passing of Simon Dunlop, age 35 of Ayr, a wonderful husband and father. He leaves behind a loving partner Katrina & three small children Annabelle (11yo), Alexander (8yo with CF) & Bridget (1yo with CF).

We knew Simon as a great advocate for the CF community, he was a volunteer on our Management Committee and a member of SUPPORTERS OF 65 ROSES INC.

Sending our love and prayers and deepest condolences to Katrina and the children and his friends…

Please go to the Yes To Trikafta page.

On that page find the post below & please make a comment.
Please post your photo in the comments if you have CF & are waiting for Trikafta.

~ Trikafta was deferred by the PBAC ~

This means further negotiations are needed, with further meetings, hopefully outside of the PBAC meetings to speed up the process.

We'll add more detail as soon as we hear more.

Greg Hunt MP Vertex Pharmaceuticals every day Trikafta is delayed is another day of life-shortening lung damage, please do everything possible to get Trikafta to 2200 unwell Australians as soon as possible.

We're not just words on a piece of paper, if you're one of these australians waiting, post your photo below.




Mark Butler MP Trent Zimmerman Scott Morrison (ScoMo)

Please sign the petition and share this post to help raise awareness that the life-saving drug Trikafta was denied approval for PBS listing in Australia for cystic fibrosis. http://chng.it/QPTT7gYV5Z

Sign the Petition Trikafta Australia: The Cystic Fibrosis game changer.

A big thank you to The Grand Hotel & Apartments Townsville who have chosen our charity to help by raising funds. The funds raised will provide essential equipment such as high speed nebulisers for local NQ families affected by cystic fibrosis. The 2021 Eco Stay program is an initiative where guests can opt out of having their room serviced during their stay, reducing the hotel’s carbon footprint, while a donation is made in lieu of the room service.
Tag: Grand Hotel and Apartments Townsville

Please help those waiting for Trikafta by submitting comments to the PBAC by February 10! This is our chance to let the PBAC know what it is like to live with CF and why we need Trikafta urgently. It's not about how many submissions are sent to the PBAC - what's much more important is what's written in the submissions. Have a read below about how we can help get Trikafta on the PBS!

What is the PBAC application for?

The PBAC application is for Trikafta for those age 12+ who have at least one F508del mutation.

Trikafta is a life-saving, life-changing medication, which is 3-5X better than Symdeko & Orkambi! Trikafta helps 90% of people with CF.

Trikafta is urgently needed, in particular for those who are very unwell and for the 30% who are not eligible for other CFTR modulators.

What should I mention in my PBAC submission?

The most effective comments are personal submissions, in particular ones that provide information to the PBAC which is not necessarily covered through Vertex’s submission.

If you / your loved one is waiting for Trikafta, you could talk about their health and why they need access to Trikafta as soon as possible. It would help if you let the PBAC know how CF affects them in terms of chest infections, needing antibiotics & physiotherapy, declining health, other medications, struggling with height & weight, past surgeries, past hospital stays and the impact on study, work, life & well being.

Those who are taking Trikafta can help by talking about how it has helped your health and changed your life (eg feeling better, less time in hospital/unwell & health improvements). It would also be particularly useful to include aspects of your health / life that weren’t captured in clinical trials, such as increased energy, becoming less sick with colds or flus, improvement with CF diabetes, liver disease, digestive or sinus issues and being able to study, work, have a family or other achievements! If you have had side effects it would also be useful to mention if these have been tolerable.

It’s important to note that the PBAC submission process is not a petition. Personal comments that provide additional info to the PBAC are much more useful than bulk submissions. The PBAC are also aware of the clinical trial results so it’s better to focus on your story and what Trikafta means / could mean for you.

When filling out the form the medication is Elexacaftor/Tezacaftor/Ivacaftor - Trikafta. Access the form here -> https://www1.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form

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If you’re interested in reading more about the clinical trial results, head here https://www.trikafta.com/study-information. In the image the FEV1 gain and 3-5X improvement is based on the F508del homozygote and F508del / min function results (FEV1, sweat chloride, CFQ-R, BMI). The +9.2 years added and 60% less with severe lung disease is from a Canadian study https://www.cysticfibrosis.ca/news/new-research-shows-15-reduction-in-cystic-fibrosis-deaths-by-2030-if-trikafta-is-made-available-now

Just announced Trikafta is on the agenda for consideration for approval for use and funding in Australia! Please read the following how to make a submission

Trikafta is on the March PBAC meeting agenda!!

Great news with Vertex submitting it for those aged 12+ with at least one F508del mutation.

From now until Feb 10 the community can submit comments supporting the funding of Trikafta. This is exactly when the community can make a difference - with Kalydeco, Orkambi & Symdeko there was a record breaking number of submissions and we need just as much support this time!

This is our opportunity to tell the government what it is like to live with CF and why we need Trikafta so urgently!

Comments can be submitted through the link below. We'll have more posts to come about how you can help.



https://www1.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form

Thank you for the lovely morning tea and donation of $250 to our charity. McGrath's generosity to giving back to the local community is inspiring...

Thank you Terry for promoting CF, good luck!

Cf awreness month is coming to an end. Cf doesn't end this month for those that have cf or their family members. This is the story behind "65 roses"

The 65 Roses Story "65 Roses" is what some children with cystic fibrosis call their disease. Learn the story of Cystic Fibrosis Foundation volunteer Mary G. Weiss and how the story of 65 Roses began.

In today's Townsville bulletin