Hi

The PBAC decision on Kalydeco was deferred, so I have been participating in lots of lobbying, particularly through social media like Facebook and twitter. If you have not “liked” the CFACT page yet on Facebook, you should! I also had the opportunity to talk with the Vertex representatives at the CF conference in New Zealand, and not only discuss with them “where to from here”, but to also let them know first-hand what an amazing drug this is, and the difference it has made in our family’s life.

Tania Minogue (Vice President) and I attended the Australasian Cystic Fibrosis Conference in Auckland, and set about updating our knowledge of the disease, and broader issues such as compliance with treatments, clinic improvements and how to keep strong mentally. Tania also rekindled relationships with companies from which we purchase many of the CFACT member assistance products.

Last week, Shannon, Gerard and I attended the Health debate at the National Press Club, where we where hoping to get a question to the minister about the timeline for Kalydeco. Unfortunately for us, it was a very full agenda, and we did not get to ask it. I was heartened, however, by what appeared to be a genuine desire to continue to improve health care, hospitals and the PBAC process from both parties.

I hope you have all made it through Winter and managed to escape the various colds and lurgies making the rounds.

Stay well!
Ruth Riach
President

New adult physio program launched

11 adults with CF now have access to specialised physiotherapy in the ACT through our Adult Physio program.

CFACT is running an inital trial program with funding provided by the John James Foundation. The trial will cover a range of respiratory physiotherapies including airway clearance, PEP technique review and injury management. TM Physio in Deakin and Kippax are delivering this program.

Keeping Active with CF

The Keeping Active with CF programme provides children and young adults with cystic fibrosis (CF) in the ACT the opportunity to participate and engage in sport and fitness activities over the next 12 months.

This program will fund:
- sporting club registration fees
- sporting apparel
- coaching sessions
- sport and fitness equipment: such as trampolines and bikes

People with CF develop an abnormal amount of thick, sticky mucus within their lungs and digestive system. Physical activity is an essential part of daily treatment as it increases lung capacity and promotes social inclusion.

Thank you to the Commonwealth Bank for donating $8,400 to support this program, for more information contact Heidi Bock at info@cfact.org.au or 0437 485 454. Please submit a Member's Assistance form to access support via the website

Online Education

Sources of Federal Government Funding for People Affected by CF

Cystic Fibrosis Queensland have been running online education sessions for their Members. In July a webinar was presented by Andrew Prowse, who is an active CFACT member and lives with cystic fibrosis. He has developed a detailed knowledge of income support and broader social security issues in relation to people living with CF.

There are many sources of income support and other kinds of funding available across federal departments to assist those with cystic fibrosis. The problem is that many do not know about these sources of support nor how to apply for them.

Over a series of webinars, Andrew will provide details on the different kinds of support and how to apply for relevant government assistance.

Andrew explained income support payments for Unemployed and casually Employed. Andrew also provided some detail on eligibility for Commonwealth Concession Cards, and the relationships between the NDIS and income support payments for those with CF.

CFQ are happy for people with CF across the country to participate. Save the date for the next webinar: About New Therapies in CF 2013, which will be presented by Professor Scott Bell. This webinar is scheduled for 6pm on 25th September 2013.

All webinar recordings and the accompanying slide show presentations, including Andrew’s presentation from this week, are available on the website at cfqld.org.au/webinars

"We're going to need a team effort here!"

This November, CF’s mightiest heroes come together for Great Strides, a family fun day and walkathon in Canberra, Newcastle and Sydney.

Rally your fellow CF Avengers and raise money to make life easier for children and adults living with CF. Come in costume or wear red (it strides faster), and after enjoy a picnic BBQ, entertainment and live music. 

Grab your CF Avengers singlet when you register online in a location near you:

Support our community by selecting an item on the CF Shopping list and make life a little easier for people living with cystic fibrosis.

Essential Vitamins - $25
Home Help - $75
Equipment - $180
Keeping Active - $250

GIVE NOW

cfact.org.au

Santas have shuffled for another year

A merry bunch of 17 Santas and their little helpers braved the crisp Canberra winter, stripped down to their budgy smugglers and shuffled 6500 meters across town to support Cystic Fibrosis ACT.

We are so proud to announce that together we have raised
$18,899.90

Our Santas raised the bar this year especially our highest fundraisers

1st - Jock Gavel
2nd - Andrew Prowse
3rd - Jordan Nicolson
4th - Louise Prowse

Thank you to our Santas for their hard work and braving the cold, to our Reindeers who ensured a safe and smooth journey, to our Elves for keeping us hydrated and on track and our event supporters Venom Signs, Budgy Smuggler and Kingston Hotel for their generosity.

We look forward to making a bigger and better 2014.

An 'ugly' sweater raises $1,500

Keeping with the Christmas in July spirit, Aset Wealth Management hosted a private function with their clients in July and included some unique fundraising activities to support CFACT.

Everyone got involved with heads and tales trivia, ugly sweater competitions, coin toss and sale of merchandise. The money raised went towards the purchase of a new E-Flow rapid nebuliser for one of our Families.

Thank you to Angus Stevenson for selling lots of merchandise on the night and to Steve Hammond - Senior Financial Advisor for hosting.

Fun Run this weekend in Canberra

A big good luck to those heading out for the Canberra Times Fun Run this weekend. We will be cheering on Matt and Michelle who have been raising money for CFACT in the lead up.

September
4th: Committee Meeting
8th: Canberra Times Fun Run
8th: World CF Day
23rd: Adolescent Clinic

October
2nd: Committee Meeting
18th-20th: CFNSW Siblings Camp
21st: Preschool Clinic

November
3rd: Great Strides Canberra
6th: AGM & Committee Meeting
17th: Great Strides Newcastle
24th: Great Strides Sydney

 

What better way to get a day off!

The recently launched Great Aussie Breather is a way for employees to enjoy a guilt-free day off work while helping a worthy cause.

We are now calling on hard working employees not to fake it, but to win an employer-funded day off by participating in this year’s annual campaign.

What you need to do?

1. Get your boss to agree to the prize - one donated day off for the lucky staff member.
2. Choose a date in the September to draw the raffle
3. Register at greataussiebreather.com.au
4. Sell tickets via your online page to friends and family for $10 a ticket and increase your chance at a day off.

All proceeds go towards supporting cystic fibrosis suffers and their families by providing hospital care and equipment for normal digestion and breathing capacity, as well as counselling and emotional support.

CFACT Development Manager Heidi Bock says,“ The Great Aussie Breather message is  two-fold. We know that Aussies love a ‘breather’, and given that Australians are some of the hardest workers in the world, a prize that resonates with the laid-back Aussie lifestyle is fitting. It’s only from the much needed funds from the public that we can continue to provide support to clients and families.”

“It’s important for the community to realise that those living with CF never get a “day off” from the condition,” Ms Bock said.

Canberra Hospital looking for Volunteers

Do you have an hour or two free to help with way finding in the new Centenary Hospital for Women & Children.

This will help families and visitors find their way in the new hospital.
You will need to be able to walk and talk ...providing a valuable first impression.

Please contact WY&C Volunteer Co-ordinator on 61747375 for more information or email PatCHvolunteers@act.gov.au

The Cystic Fibrosis Passport

The purpose of the book is to provide parents, relatives, teachers and caregivers an outline of the fundamental aspects of the everyday care of young children with cystic fibrosis.

All CFACT Members with a child with CF under 4 years will be receiving a free copy of the edition soon.

You can purchase a copy for $8.50 from booktopia.com.au

How can we improve community transport in the ACT?

The ACT Government is reviewing community transport services in Canberra to learn more about the way in which the services are used, Minister for the Environment and Sustainable Development, Simon Corbell, said today.

“People who use or provide community transport services and other stakeholders in our community are encouraged to have their say by taking part in a short survey,” Mr Corbell said.

“We particularly welcome ideas about the eligibility for services, operational hours, types of services provided and the role of community cars and buses in the wider transport system.”

To access the survey or submit comments online visit: timetotalk..act.gov.au/

The consultation closes on 4 October, 2013.

What would we find in your Happiness Jar?

Samantha Tidy has recently launched her latest book The Happiness Jar at the National Library of Australia.

"Rachel Hudson succumbs to cystic fibrosis at 27, leaving behind secrets that push each of her remaining family members to question what it is they want from life, and from each other. Set against the red dust of the Kimberley desert, and the holy Ganges River in India, this captivating story reminds us that we continue to live in the memories we leave behind."

You can purchase a copy online at storytorchpress.com.au for $24.95