Hi

What a busy couple of months it has been for the CF community.

First up, I would like to welcome Heidi Bock to the position of CFACT Development Manager, a position we, the committee, have been working towards for many years. Heidi comes to us as the former President of CFACT, but also has an extensive background in the not-for-profit and non-government sector, and will be invaluable to us over the coming year, growing CFACT as an organisation and working with the local community. As the Vice President, I was promoted to the role of President at the beginning of May.

Earlier in the year, my daughter Angela and I had the pleasure of attending the Rare Voices lunch at Parliament House, along with David Jack, CEO of Cystic Fibrosis Australia and two other CF families. We met many politicians and managed to lobby for the need for a Rare Diseases register, as well as for Cystic Fibrosis generally.

Later in May, I was again invited to Parliament House for a 65 Roses morning tea, along with members of Cystic Fibrosis Australia, Alex Parker and Shannon and Gerard Malone-Brierly. You may have seen some of the extensive press coverage of the event, focused on Alex and her generous grandfather, who is paying $300,000 a year so Alex can be on the new drug Kalydeco while we wait for it to become available through PBS.  I spoke with the Health Minister, Tanya Plibersek, for about 10 minutes, and discussed the need for these specialised medications to be available to the community. I was pleased with her response, and impressed with her obvious knowledge of Cystic Fibrosis when she spoke to the gathering.
Thank you to everyone who put in a submission to the PBAC for the medication Kalydeco. The committee will read every single one.

Until next time, stay healthy, and see if you can support our Santas as they run in their Speedos in the cold!

Ruth Riach
President

Membership Renewal time!

If you have not renewed your membership with Cystic Fibrosis ACT in the last 6 months it is time to do so, BEFORE JUNE 30. Membership is $0 and you can renew simply using our online membership form. All individiuals who wish to access ACT services must have a current active membership to be eligible.

Members Assistance requests - NOW ONLINE!

Making things easier for you, now all active Members living with Cystic Fibrosis can submit their requests via our website form CLICK HERE. We suggest you save this page as a favourite!!

Calling all adults with CF 

We are very excited! Cystic Fibrosis ACT has recently secured funding for Adults with CF to receive physio percussion. Adult members who would benefit from 1 percussion session per month, please email you expression of interest to info@cfact.org.au
There will be more on this coming out soon. Please watch this space.

Getting Better Together

Ruth Riach and Tania Minogue will be representing Cystic Fibrosis ACT at the upcoming CF Conference in Auckland. We look forward to hearing about the conference and the information shared.

The Conference will be available online. Keep up to date via the website here

The 6500 Santa Speedo Shuffle is on again!

Over 15 Santas have signed up to strip down and run 6.5km across Canberra on a crisp winter's day, July 28. The 6500 Santa Speedo Shuffle is a fun and unique way to make a daily difference to adults living with Cystic Fibrosis in the ACT.

Get Involved?
We are on the look out for Elves and Reindeers to assist as event volunteers. Contact Heidi for more information info@cfact.org.au 
Or join us for the Santa Sunday Session, hosted post run at the Kingston Hotel (from 12.30pm).

SUPPORT - HEAD SANTA ANDY

Every Santa on the run must raise a minimum of $550 for Cystic Fibrosis ACT and our Head Santa Andy is the pick of the bunch.

"I spend 108 minutes on the care and treatment of CF a day, just to survive. Cystic Fibrosis ACT provides me with the practical help that makes a daily difference to my life and that of others living with CF in our community.
Please support me in this year's 6500!"
- Head Santa Andy

Remember there is a great committee in ACT ready, willing and able to support you and make your fundraiser a huge success.

Email Heidi at info@cfact.org.au

65 Roses Gala

Thank you to everyone who joined us for the 65 Roses Gala, we had a great event and raised $19,161 for the cause.

Special thanks to

• Tim Russell - LJ Hooker Kaleen
• Andrew Prowse - CFACT Guest Speaker
• John, Fiona & Bella Mitchell
• Amy Jenkins
• Rafe Morris
• No Idea
• CF ACT Committee especially Tania Minogue and Martin Stallard

A number of local businesses contributed to our success

CIT Floristry                        CIT Carpentry                     National Museum of Australia
The Wallabies                      The Brumbies                     Charity Paintball
Questacon                           Wallabies                           Club Lime
Heart Felt                            BODY Beauty                     Supabarn
Basketball ACT                    The Hellenic Club                Helping Hands Group
Arbonne                              Boathouse by the Lake

Celebrating 65 Roses Day

On Friday May 31, we celebrated 65 Roses Day with a table set up in the Canberra Hospital. CIT Floristry hand-made a unique banner for us to display on the day, thank you very much to the students who were involved in this project.

Over $1,000 was raised across the day, from donations online, our stall and the businesses who hosted a merchandise box in their shop. Thank you to everyone who gave so generously.

July
1st: Adolescent Clinic Day
3rd: Committee Meeting
28th: 6500 Santa Speedo Shuffle
29th: Preschool Clinic

August
7th: Committee Meeting
11th: City 2 Surf, Sydney
17th-20th: 10th Australiasian Cystic Fibrosis Conference
26th: School Aged Clinic

September
4th: Committee Meeting
8th: World CF Day
23rd: Adolescent Clinic

**Visit our website for more events coming soon

Connect with Social Media

There are many ways to connect with the cystic fibrosis community locally, nationally and across the world. Here are some sites/pages that may be of interest to you:

FACEBOOK.com

Cystic Fibrosis ACT - our local CF page. Here you can keep up to date with what our Committee is up to, both with fundraising and service delivery.

The Australian CF Camp - a closed group for people with CF only. Administered by the current President of CFNSW Bryson Vaughan, this is a great place to talk and discuss CF with others in the same situation.

TWITTER.com

CF Aware - This is an international feed, that sends out the facts on CF from around the world.

YOUTUBE.com

CFA Channel - The National AU channel for Cystic Fibrosis.

Know any others?? Let us know!

DisabilityCare - Enhanced Service Offer

The ACT is proud to be a launch site for DisabilityCare starting 1 July 2014.
To prepare the ACT community, people with disabilities, their families and carers, as well as providers of disability services, from 1 July 2013 we are delivering the Enhanced Service Offer (ESO).

What is the Enhanced Service Offer?
To prepare for the ACT launch of DisabilityCare Australia, formerly known as the national disability insurance scheme, $7.7 million will be issued in grants paid directly to people with disability, including those with psychosocial disability.

What kinds of grants are available?
There are three kinds of grants, and each has a different purpose:
• Aids, Equipment and Minor Modifications to a home (funding up to $10,000)
• Quality of Life for one-off items and supports (funding up to $5,000)
• Grants to purchase flexible supports and services to meet needs and provide a break for a carer (funding up to $12,000)

The Enhanced Service Offer is jointly funded by the Commonwealth and ACT Governments.

People applying for a grant are encouraged to think about their whole of life goals and the supports and services they will need to achieve those.
This includes support and services which are formally delivered by paid organisations or informally provided by friends, family, neighbours and others in the community.
The ESO will give people a real opportunity to experience control and choice using a small allocation of funds.

When will grants open and where do I get the application form?
The Enhanced Service Offer will be open to applications twice:
•         1 July 2013 – 9 August 2013
•         30 September 2013 – 8 November 2013
The online application form will be available from  act.gov.au/enhancedserviceoffer on 1 July 2013.

Applicants must:
• be under 65 years on 1 July 2013
• live in the ACT
• be an Australian citizen or the holder of a permanent visa
• have a disability that is attributed to intellectual, cognitive, neurological, sensory or physical impairments or to a psychiatric condition.

Nutrition Guidelines for Cystic Fibrosis in Australia and New Zealand
Consumer involvement in the review of the Australian and New Zealand CF nutrition guidelines.

Today the nutrition guidance and information for people with cystic fibrosis centres around the 2006 Australasian Clinical Practice Guidelines for Nutrition in Cystic Fibrosis, combined with new research based evidence as it emerges. The 2006 document was developed by 22 specialist dietitians working with cystic fibrosis, and provided a comprehensive summary of evidence based practice.  Plans are underway for the review and expansion of the 2006 guidelines with a project entitled, “Nutrition Guidelines for Cystic Fibrosis in Australia and New Zealand: Evidence Based and Consensus Recommendations 2012-2015”. It aims to produce an up-to date and comprehensive resource that addresses many aspects of nutrition management for people with cystic fibrosis.

Who is involved in this project?
The review of the nutrition guidelines for people with cystic fibrosis involves over 40 specialist dietitians in centres across Australia and New Zealand.  To ensure the guidelines have broad applicability, people from a wide range of disciplines including medical specialists & pharmacists right through to physiotherapists and librarians are involved, forming a consultative group, ensuring the project addresses as many of the issues and considerations relevant to nutrition management in cystic fibrosis. With the membership spanning Australia and New Zealand, the group communicates primarily through quarterly teleconferences to discuss and guide the project and receive monthly electronic updates to make sure everybody is kept up to date.

The project membership also includes consumers - people representing the cystic fibrosis community. These members have been nominated through Cystic Fibrosis Australia and Cystic Fibrosis New Zealand. Incorporating consumer perspectives is an important aspect of this project, so we are excited to have consumer representation within the project team - meaning the end result will be holistic and relevant – for all users.  

Which nutrition topics will be covered?
This project will produce comprehensive documents that cover pretty much all aspects of nutrition for people with CF. The nutrition topics are structured around questions that are raised in practice by specialist dietitians working with people with cystic fibrosis - in hospitals and clinics across Australia and New Zealand. These topics are collated under broader headings such as nutritional assessment, self-management, macronutrients, micronutrients, complications, pregnancy and lung transplantation. Work has started, and the topics that are underway at the moment are appetite stimulants, minerals, vitamins and pregnancy.  The result will be a comprehensive information resource– with relevance to consumers and health practitioners alike.

Further information?
Thoughts, queries, ideas or concerns can be discussed with your CF centre or specialist dietitian. We will have a poster displaying the project at the upcoming CF conference in New Zealand, for those of you attending. We will also continue to provide updates through community forums so keep an eye out!