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CFTNEWS

SUMMER EDITION 2017 CORPORATE PARTNER:

Do you know about CFSmart? SUPPORTERS:

CF Smart is a set of resources about CF for teachers, early childhood educators, parents and students. It’s important that if your child is starting child care or school, or moving to a new school that they know as much as possible about CF. With the start of a new year approaching we’d like to take this chance to make sure you know what’s available.

HOBART

The CFSmart website at www.cfsmart.org has a range of downloadable resources including fact sheets, information booklets, videos, handwashing posters and much more. A new addition is a set of learning modules that educators can undertake at their own pace. We have a limited number of printed copies of the hand-washing poster and bookmarks in our office. We’re more than happy to post some out to you so that you can take them to your child’s child care centre or school in 2018. We are also happy to print out hard copies of the educator booklets for you. Please don’t hesitate to call us on 62 346085 if you’d like to receive some. CFSmart is a wonderful resource that was put together by staff of CFWA and CFCC (Vic) and is available nationally. We are grateful for the work that has gone into this program so please take a moment to look at what’s available.

OUR VISION Lives unaffected by Cystic Fibrosis.

OUR PURPOSE To help Tasmanians with CF to live longer and healthier lives and to provide support and advocacy for the CF community. CYSTIC FIBROSIS TASMANIA Level 2, 38 Montpelier Retreat, Battery Point TAS 7004 GPO Box 245 Hobart TAS 7001 Freecall 1800 232 823 P: 6234 6085 E: general@cftas.org.au www.cysticfibrosis.org.au/tas

NEW MEMBER SERVICES BROCHURE Have you seen a copy of our new Member Services Brochure yet? We’ve been sending them out with membership renewals over the last few months. This brochure gives a brief overview of the many services that CFT provides to members. It’s handy to check it from time to time to ensure you are accessing all of the programs that you are entitled to. If you haven’t seen it you can also view a copy on our website at www.cysticfibrosis.org.au/tas/cf-brochure CFT NEWS 1


and Sam for making the time in your busy schedules to undertake this. We appreciate your preparedness to be two of the “public faces of the CF community”.

CFT’s Executive Officer, Paula Wriedt

A NOTE FROM OUR

EXECUTIVE OFFICER It’s hard to believe that another year has flown by and that Christmas is just around the corner! Like always, I tend to think I’m organised for the Festive Season, but then I run around in a last minute panic for gifts I have overlooked.

We’ve had a busy year this year with the first comprehensive member survey going out in August. The outcomes of this helped us update our Strategic Plan. You can read more about the outcomes in this edition.

I’m happy to report that CFT has had an extremely busy year. Two new fundraising events were held – the Dodgeball Fun Night a few weeks ago and the highly successful Breathe Fit for CF – outdoor fitness class back in March. These were both terrific opportunities to broaden our supporter base and appeal to others outside of the immediate CF community.

Nationally we had a great win early in the year with the PBS listing of Kalydeco for 2-6 year olds after a hard fought campaign. Unfortunately, the battle to have Orkambi listed on the PBS continues following its rejection by the Pharmaceutical Benefits Advisory Committee several months ago.

We have focussed our efforts this year on attracting new corporate sponsors. One thing we’ve learned is that it is certainly a competitive world when it comes to sponsorship. We are extremely grateful for the generous support of Port Arthur Villas – who have committed $6,000 of accommodation vouchers to us every year for the next ten years!

As I am writing this the CFA Governor General Patron’s Awards were just presented in Sydney. In this edition you can read more about this year’s Tasmanian winner, Mandy Lewis. Mandy has been an important part of CFT for nearly 8 years through her volunteering efforts. Congratulations Mandy. My sincere thanks to the members of the CFT Committee who have contributed throughout the year, as well as all our volunteers who have helped out at various times. Without all of you we couldn’t achieve what we do. Best wishes to you and your loved ones for a safe and happy Christmas and New Year. I am certainly looking forward to 2018 and all that we can achieve for the CF community in Tasmania. Warm regards,

PAULA WRIEDT EXECUTIVE OFFICER

Cystic Fibrosis Australia has showed tremendous leadership in advocating for these drug listings throughout the year. I’d like to personally acknowledge the significant role that CEO Nettie Burke, has played in such leading a respectful and well thought out advocacy campaign. Whilst we didn’t get the outcome we wanted with Orkambi, the fight will go on.

A group of CFT members undertook consumer advocacy training as part of CFA’s CFCAN program at the start of this year when Nettie travelled to Hobart to run a day long course. These members So don’t forget, as a member or gained valuable skills in becoming supporter, if you work for a business, advocates for issues of concern to own a business or know someone the CF community. who does, please consider chatting to us about corporate sponsorship. Two of them, Donna Emery and Sam Fox, were so impressive that Any leads that anyone can provide they were invited by CFA to make us with are greatly appreciated. presentations to Government We hope to be able to share more representatives at the stakeholder positive news with you in the New consultations in Canberra about Year as our discussions continue. PBAC listings. Thank you, Donna The best leads that we have had so far have come from personal connections within the CF community.

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CFT wishes you a safe and enjoyable christmas break! The CFT office will close at midday on Thursday 21st December 2017 and will re-open on Monday 8th January 2018.

Please note: This newsletter may contain articles with opinions from writers that may not necessary be representative of the official opinions expressed by CFT – Editor


CFT’s President, Scott Lancaster

PRESIDENT’S REPORT At times, having an Executive Officer with ‘friends in high places’ has been an absolute boon for Cystic Fibrosis Tasmania. It’s helped open doors that might otherwise have been shut. It’s helped us secure some significant financial and nonfinancial contributions towards the services CFT provides. And it’s one of the reasons why the CF community can count amongst its supporters so many figures from every side of State politics. But Paula Wriedt’s connections run far deeper than that, and ever since taking on the role of Executive Offer she’s rallied people around her to the CF cause. Former staffers and supporters from her time in Parliament, family and friends, her partner – nobody is ‘safe’. Over the years, the envelopes that your CFT newsletters came in were often stuffed and sealed by her children and her daughter has been a regular volunteer at events! One of the people that Paula has recruited to support the CF community is her good friend Mandy Lewis. You may not have met Mandy or ever heard of her. But she has made as big a contribution to CFT and the CF community in Tasmania as any VIP who we’ve had the good fortune to count amongst our supporters. Mandy has been involved in practically every fundraising event held by CFT in the south of the State since

INTRODUCING YOUR NEW CFT COMMITTEE MEMBERS

May 2010. She has devoted literally hundreds of hours of her time to being on organising committees, attending events and securing donations. She even organised a small market with various stallholders at her own house in 2012 that raised $1,500 for CFT.

Two casual vacancies on the CFT Committee were recently filled and we’d like you to introduce the new members to you.

Mandy has been the organiser of the last two Ladies Lunches in Hobart, one raising a record amount of $11,400. She is a regular volunteer in the CFT office where her help is invaluable. And I’ve frequently seen items at silent auctions at CFT events with Mandy’s name against them as the donor.

Emily Stride: Emily has over 10 years’ experience in Recruitment, Business Development and Human Resource Management within the Corporate Recruitment arena and holds qualifications in Human Resources and Business Management. For the last five years she has worked in senior management roles within Searson Buck.

Mandy doesn’t have a direct connection to CF through family or friends. However, through her friendship with our Executive Officer, she has become passionate about helping our Association and, more importantly, the people we serve. And she’s done all of this while juggling the demands of raising three children on her own.

Emily and her husband Josh are parents to three year old Lottie, who has Cystic Fibrosis and their nearly one year old son, Sullivan. Emily has brought a wealth of knowledge to the CFT Committee and has been openly sharing her family’s story to help raise awareness about CF.

She’s also done it quietly, tirelessly, and incredibly humbly. Which is why I’m so glad that she won the Volunteer Award at the recent CF Australia Governor General’s Patron’s Awards – and that she could be persuaded to attend the event to collect the award. Her win follows in the footsteps of Denny Fleming’s Community Fundraiser award in 2016 and Carrie Leppard’s Tasmanian Young Achiever Award in 2016 in the Disability Services Category. Every charitable organisation needs people like Mandy, Denny and Carrie, and at a time of year when there’s a focus on giving to others, it seems appropriate to acknowledge the people who give so much to the CF community. So, heart-felt thanks to everyone that’s supported CFT in the past 12 months, from Paula and Mel in our office to all the volunteers, members, businesses and members of the wider community that have put their hands up, or into their pockets, to support our worthy cause. I wish every member of the CF community and its supporters Christmas blessings and a happy and healthy 2018.

Eva Ewe: Eva has a Bachelor of Law and Master of Professional Accounting from the University of Tasmania. After working as a Solicitor in Sydney she returned to Tasmania and currently works as the Audit Manager for Accru Hobart, a business advisory and financial services firm based in Rosny Park. Through this role Eva has worked with many Not-for -Profit organisations and this ignited her passion for doing more within this area. Already an active volunteer with another charity, Eva decided she had the time to take on more, and volunteered to become CFT’s Treasurer. Since Eva was appointed to the CFT Committee in late September 2017 she has already helped out at several events and shown a huge enthusiasm and passion for the work that we do. The other members of the current CFT Committee are: Scott Lancaster (President); Judi McGee (VP & Public Officer); Nicole Bryant (Secretary); Bridget Caplice; Sean Collins; Sam Fox; Aaron Gay; Dr Alison Thurstans. The next AGM will be held in April 2018 and nominations for vacant positions will be called in March.

SCOTT LANCASTER PRESIDENT Eva Ewe

Emily Stride

New CFT Treasurer

New CFT Committee Member

CFT NEWS 3


All clinical trials and studies have a specific sponsor and they all follow an explicit regimented protocol that encompasses signing the informed consent form, the process of joining a clinical trial after meeting all criteria, and following all necessary steps to the project’s conclusion. Participating in a clinical study is a personal choice. Some of the benefits include: • Taking an active role in managing your own CF, or that of your child • Gaining access to new treatments before they are more widely available • Helping advance our knowledge of CF

CLINICAL TRIALS & STUDIES IN AUSTRALIA: COULD IT BE AN OPTION FOR YOU? Clinical Trials and Studies are major contributors in cystic fibrosis (CF) research and treatment development. Nowadays there are many opportunities to participate, however what should you consider before you or your child get involved? Clinical trials, also referred to as Interventional Clinical Studies, apply specifically to testing a treatment method. It can range from a potential drug to a treatment or even an exercise study. Participants receive one or more treatments (interventions), or a placebo, so researchers can evaluate the effects on the participant’s health. The interest in Adaptive Clinical Trials, that evaluates a medical device or treatment by observing participants outcomes on a prescribed schedule, is an approach of interest to clinical trial in Australia. These adaptive designs reflect very much on our client/personalised centredcare, where the parameters of the trial protocol can be modified in accordance of the observations made on the participants. However, for this

4 CFT NEWS

flexibility to redesign clinical trials at interim stages, the trial protocol is set before the trial begins. Overall, the aim of an Adaptive Clinical Trial is to move more quickly, identify drugs or devices that have a therapeutic effect, and to zero in on patient populations for whom the drug is appropriate. A key modification is to adjust dosing levels, which in traditional clinical trials, were not considered until a trial was completed. So, let’s watch the space to follow on Adaptive Clinical Trials becoming available in Australia. Other studies called Observational Clinical Studies that are not to test potential treatments are also available. During these studies, researchers keep a close eye on participants throughout their current treatment plan and track health outcomes. These observational studies are used to develop new ideas about CF and how the disease might best be treated. Under these two types of clinical studies there are many sub-types. For example, behavioural studies, where researchers try to identify and understand how factors such as self-management, mental health and social support are associated with health outcomes.

Some possible risks include: • Side effects of the studied medications or treatments • Unwanted events during the trial • Failure of a treatment to work Prior to the trial you will be supplied with a patient/consumer information form that will clearly explain the aims and the requirements of the trial. Remember that by signing an Informed Consent Document you are not signing any form of contract and you can leave the study or trials at any time. In turn, those who are monitoring the trial, such as the principal trial investigator or the study medical monitor, can withdraw you from the study if they believe your health is at risk. Finding a clinical study and staying informed: If you would like to participate in a clinical trial, talk to your CF care team. Your CF doctor can help you find trials you or your child might be eligible for. If there are no current studies at your CF centre, a referral can possibly be made for you to participate in a study at another CF centre. If you want to be notified when a new CF trial is posted, you can sign up by sending Cystic Fibrosis Australia an email, and alerts will be sent directly to you when new trials are posted or when results from a trial are released. For more information go to: www.cflivesmatters.org.au www.cflivesmatters.org.au/ClinicalTrials-Finder Article originally printed in Red Magazine, CFWA (Edition 4, 2017) and reproduced with their permission.


Some of the CFT members attending the conference (L-R) Karen Bone, Carrie Leppard, Patsy Leppard and Christine Burdon.

AUSTRALASIAN CF CONFERENCE REPORT Article supplied by Donna Emery My husband Dean and I attended the 12th Australasian Cystic Fibrosis Conference at the Crown Promenade Conference centre in Melbourne in August this year. The theme for the conference was optimism, opportunities and outcomes. We were very interested to hear of the advances in research and the new trial medications that are currently coming through the pipeline. One of my personal highlights of the weekend was meeting Lauren

Rowe and hearing her amazing speech during the opening address of the Lay Program on the first day. Lauren has CF and has had a double lung transplant. She is known for her YouTube videos and social media accounts which explain what having CF and a chronic illness is really like, but with a cheeky, comedic twist. Another highlight was the key note address at the official opening of the conference on Sunday by the President and CEO of the Cystic Fibrosis Foundation in the US, Preston Campbell. This was titled “A Time For Optimism”

(L-R) Donna Emery and Karen Bone

and this is exactly what he left us feeling after his speech. It was also lovely to catch up at the Lay Conference dinner, at the restaurant Melbourne Public, with some friends from the Tasmanian CF community that we have gotten to know. We have found the ability to meet and connect with other parents and carers, not to mention the CF medical community, is one of the major benefits of attending Cystic Fibrosis conferences. There is very little chance of doing that anywhere else. Thank you to Cystic Fibrosis Tasmania for helping us afford these trips as we feel they are an essential part of caring for our beautiful 11 year old boy Luke.

PERTH LIONSCLUB QUIZ NIGHT CFT Vice President, Judi McGee and Brian Mathieson, President of Perth Lions Club.

On Saturday, October 7th the Lions Club of Perth held a Trivia Night to raise funds for Cystic Fibrosis Tasmanian. The club has a strong affiliation with CFT as Aaron Mackrill (one of our past presidents and sufferer of CF who lost his battle with the disease in 2010) has relatives who are members – Ralph (stepdad) and Curtis (brother). Curtis suggested this project to the club earlier in the year and then undertook to organise and run the event.

It was a very successful night with approximately 100 people attending. There was a raffle along with a silent auction, live auction, guess the amount of jelly beans, V.I.P. table and two rounds of Heads and Tails. Due to the overwhelming support of businesses and people attending the club are looking to make this an annual event to benefit CFT.

$3,300 was raised and then the Lions Club of Perth very generously increased the amount to $4,000. A cheque for this amount was presented to Judi McGee our Vice President the following week. We would like to personally thank the club for their ongoing support over the years and look forward to working with them in the future.

CFT NEWS 5


S C I N I L C E H T FROM “THE WORLD’S TOUGHEST HALF MARATHON”

A guy with CF, a mum who has a young child with CF, and a crazy chick who works in CF……an unusually hot Spring day in Hobart and an early morning stroll up a mountain. All for a good cause. It all began when Maree McCulley, a fellow CF avenger, who recently completed the Ross Half Marathon in a red tutu in an effort to raise awareness for CF, put out the call for others to join her in this crazy, but wonderful idea. The goal was to gather the masses in a sea of red to open eyes. On the 19th of November 2017, James Kleining, Sam Fox and Jen Hauser all decided to join Maree in wearing red and raising awareness for CF as they made their way up the mountain in the 2017 Point to Pinnacle. James has CF and has recently added to his list of achievements running a half marathon in Adelaide, running a full marathon in Ross and now running the toughest half marathon in the world. The biggest concern for James was the important need for salt replacement and hydration whilst competing in the event, and also after wards. James completed the event in 2 hours and 34 minutes and did a sterling effort particularly after two weeks of being very productive of thick sputum before the event. As for Sam and Jen, they donned the team red top and tutus, and opted for the walking event. Sam continues to focus on events that she can complete as a personal challenge whilst also raising awareness of CF and advocating for 6 CFT NEWS

her 3 year old Scarlett who has CF. Sam is such a machine that she could have easily run the event. She plans to train for exactly that next year! As for Jen, she is still debating whether she will actually train for the event next time and run it with Sam, or just never step foot on the mountain again. Any event can be turned into an opportunity to raise awareness in the community for CF. It doesn’t need to raise money but just get people talking about CF and help the community understand what is involved with having CF. Just like the City to Casino, an event that has continued to grow over the last 5 years since the very first CF challenge at this event. Watch this space for save the date reminders for the 2018 City to Casino, it’s going to be the biggest yet with as many people we can recruit in red. I would like to thank Sam and James for continuing to inspire me to do more for the CF community. I read recently in a campaign overseas for CF that it is the invisible condition. For the community it is hard to understand and so then it is hard for the individuals with CF, and even harder to promote fundraising successfully. Thank you Sam, for helping me to get up that mountain. Thank you James, for helping others touched by CF to know that the sky’s the limit. And a huge high five to Maree for her amazing effort in the run!! Article written by the Crazy chick who works in CF (aka Jen Hauser)

Merry Christmas Everyone from the Tas Paediatric Cystic Fibrosis Services! Please note that our offices are closed for the following date: Hobart: Dec 23rd to Jan 1st Launceston: Dec 22nd to Jan 15th Burnie: Dec 22nd to Jan 8th (CF nurse away Dec 13th to Feb 5th) Please remember that if you have any issues please go and see your GP or attend your local emergency. You can also call your outpatient clinic area or paediatric ward via the hospital switch who may be able to forward you to a on on-call doctor.


TASMANIAN ADULT CYSTIC FIBROSIS UNIT – CHRISTMAS SERVICES Merry Christmas to everyone!!

MASKS, HAND HYGIENE AND ALL THAT JAZZ! Times are a changing and with the bringing in of the New Year be prepared that things may be different. Around the world over the last few years there have been some significant changes in how CF clinics are run, and how staff and patients are encouraged to be more proactive and diligent in minimizing any risk of cross infection. These changes have been introduced due to a clearer understanding of how bugs in CF work between individuals and in the environment, and also with new bugs emerging around the world. In Tassie we are working as a team around the state to review our current practices and consult with other larger CF clinics to determine any changes we may need to make. We want to ensure we involve you in this process and this article is our first step. We understand change can be difficult and we also understand that some of the recommendations to reduce cross infection can be unsettling, appear over the top, and difficult to implement. Our aim is to ensure we provide you with the information you need to understand why we are making these recommendations.

One of the changes that many centres in Australia and overseas have introduced is encouraging individuals with CF to wear masks when they attend clinic, when they are an inpatient and walking around the hospital and at other time , if they are attending common space such as pharmacy, radiology or ambulatory care centres. This is probably one of the most contentious points in the recommendations. The idea behind the mask is for your protection directly but also to assist with minimizing the exchange of CF loved bugs within these common spaces in the hospital. Some recent studies coming out of Australia demonstrate that the aerosol droplets released in a cough may remain in the air for up to 45 minutes before settling on the surface and may be able to travel up to 4 metres or more. Practicing good hand hygiene and cough etiquette are the first lines of combat to tackle cross infection but masks are another safeguard. Please talk to your CF health care workers and ask any questions or voice any concerns you may have. Watch this space and we will continue to provide resources that will help with the changes ahead.

The TACFU phone will not be on from the close of business on the Friday, 22nd December, 2017. TACFU will reopen on Wednesday the 3rd January, 2018. During this time you are welcome to text message the phone with any non-urgent requests and these will be followed up by a member of the team as soon as possible on the re-opening of the unit. However, if you require medical advice during this period of time we would encourage you to contact your local GP. Or if you think you require an admission you may contact your local hospital switchboard and ask to speak directly with the respiratory physician on call. Alternatively, if it is a medical emergency, you are encouraged to contact an ambulance, or if it is appropriate, present to your nearest Emergency Department. TACFU encourages you to contact the unit on 0400 860 094 or 6166 7556 prior to the Christmas period if you require any scripts, or if you have not had a review in a while and are not aware of any future clinic appointments. The first clinic in the north of the state will be held on the 5th of January 2018 and this will be a multidisciplinary clinic. TACFU wishes you all a very Merry Christmas, with good health, safe travels and good times with friends and family. We look forward to seeing you in 2018.

CFT NEWS 7


SHOWING AN “O” FOR ORKAMBI Left Images: Luke and Gabi Emery pose their “O” for Orkambi

Just prior to CFA’s meetings with Federal Government representatives about the Orkambi listing, CEO Nettie Burke put out a call for members from across Australia to make the “O” shape and send it to them. There was a great response to this call. All of the pictures were then presented at the meeting. It was a very powerful message – with the pictures covering the entire meeting room table. Here’s one that was sent in by our member, Donna Emery. Her son Luke and daughter Gabi, being creative in making a letter “O”. Next time you see a request like this please consider taking part – as they say, a picture is worth a thousand words!

BIRTHDAYS AND TRANSPLANT ANNIVERSARIES AUG Mitchell Jansen Jermaine Williams Sommer Tuson Luke Newson Jason Ellis Angus Button Saxzen Diston Kristylee Howard Emily Williams Nikki Morrisby

6th 7th 9th 10th 17th 19th 20th 20th 23rd 29th

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Alistair Priest Ainslie Fox Ebony Gay Jesse Cocker Lena Buonaccorsi Daniel Maree Hannah Paget Colin Robertson

The Grey Nomads have been extremely busy during the annual agricultural show season. Made up of Edwin Aliphon and his wife Suzanna, this singing duo travel the length and breadth of Tasmania performing at rural shows. Sadly, the couple lost Suzanna’s two grandchildren to CF several years ago, but their passion to continue to support our Association continues. Edwin and Suzanna have raised nearly $1,000 this show season over the last four months. But it’s not just the money being raised that’s important. The Grey Nomads play a valuable role in raising awareness of Cystic Fibrosis throughout the community. Thank you Edwin and Suzanna for your ongoing support.

Charlotte Wall Nathan Smallbon 7th 7th 8th 10th 13th 17th 19th 27th

NOV Jesse Pindell Phoebe Lillywhite Michael Haslewood Ashley Watson Blake Crossin Joseph Johnston

Grey Nomads

4th 10th 10th 15th 21st 23rd

21st 28th

JAN Wayne Alomes Kaleb Dwyer Isaac Anderson Sarah Rushworth Jack Atkins Matt Langham FEB Ashley Dean Ella Burrill Aleyna Harrison Leigh Richards Aria Bedelph

6th 11th 12th 13th 14th 22nd 8th 10th 14th 23rd 23rd

TRANSPLANT ANNIVERSARIES

SEPT Cemon Free Taylor Bakes

OCT

Above image: Edwin Aliphon of the

DEC 7th 29th

Lara Camino Amarli Allen Susanna Gibson Jasper Westlake

9th 19th 21st 21st

Alison Walters 16/12 Wayne Alomes 29/09 Wayne Enright 01/10 – 20 Years


programs and research. Big W once again allowed CFA to sell pins and pens in store in August and the Newcastle Ball Committee organised a gala event that raised a great deal of money for CFA.

A MESSAGE FROM CYSTIC FIBROSIS AUSTRALIA 2017 was a busy year for Cystic Fibrosis Australia and the Cystic Fibrosis Federation and we still have more to do before we break for Christmas. Excitingly 2018 is already shaping up to be a corker with a number of new clinical improvement and research programs planned. We began 2017 with the Canberra Protest and the announcement that children between the ages of 2 and 5 years were getting access to Kalydeco. This was cause to celebrate.

Consumer Connect, funded by L J Hooker, was launched in June and now provides people with CF and the wider community access to experts and health professionals. Consumer Connect also took the Australasian Cystic Fibrosis Conference online for all to enjoy. CFA has a number of dedicated community fundraisers who ran, jumped, cycled, climbed and swam for CFA in 2017 and many were supported by the Vertex Community Sponsorships. We still have some money left in this fund so contact CFA if you are planning a fundraising event in 2018. The CF community also enjoyed CF CAN (Consumer Advocacy Network) training in Tasmania, Brisbane and Adelaide. More training sessions are planned for 2018 so contact CFA if you would like to be part of the Network.

The Australian Cystic Fibrosis Research Trust (ACFRT) supported three top Up Scholarships, the Ann The Mothers Day Markets were a Maree Bosch Fellowship and the great success and provided CFA with new Innovation Grants. All grants a fabulous platform to raise cystic were peer reviewed and importantly fibrosis (CF) awareness. Our Christmas appraised by members of the CF Markets are on in Sydney in December community. More than 15 Consumers and we hope to again raise significant were involved in research grant funds for CF clinical improvement reviews in 2017.

CFA finished off the year by thanking an amazing group of winners at the Governor General’s Patron Awards at Admiralty House. But that is not the end … The overwhelming disappointment of 2017 was the PBAC’s third rejection of Orkambi. CFA is frustrated by both the Government and Vertex’s inability to negotiate and we plan to continue to advocate strongly in 2018 for all Australians with CF. We need immediate access to all drugs and treatments that will improve and extend lives. The alternative is not an option. It is cruel and insensitive to delay access. We need more voices behind our advocacy efforts. If you have a message for Minister Hunt or Vertex send it to CFA. We plan to inundate both parties with our messages of frustration and despair before Christmas so we are not forgotten in the New Year. Have a wonderful Christmas and let’s hope our elected officials and drug company executives can see their way clearly to allow Australians with CF access to new drugs like Orkambi. Yours sincerely

NETTIE BURKE CEO – CYSTIC FIBROSIS AUS.

IS YOUR CHILD TURNING 16 or 18?

Turning 16 and 18 are significant occasions in any adolescent’s life and definitely worthy of celebrating. For young people with CF it is also a time of change as they transition from Paediatric care to the Adult clinic.

This can be a confusing time for everyone as there is a lot of paperwork that needs to be done. CFT are offering a new service to families of children who are these ages. If your child has recently turned 16 or 18, or will in the next year, you will have received a letter from us via email recently. The letter contains a handy check list of all the things that you need to consider to make the transition as smooth as possible. These include:

• • •

Your child having a separate Medicare card; Ensuring your child has their own CFT membership when they turn 18; The range of Government assistance that is available (eg Health Care Card, Mobility Allowance); Ensuring your child registers for the PBS Safety Net; Where to find valuable information about transitioning to Adult Care; and much more.

These letters went out via email to make it easier for you – you simply click on the many links such as Government websites to register or find out more information. If you didn’t receive your letter, or your child has already turned 18 and you’d like to receive a copy anyway to make sure you have done everything, please let us know by emailing us at admin@cftas.org.au and we will send you a copy. CFT NEWS 9


MEMBER SURVEY: INFORMING OUR NEW STRATEGIC PLAN

The top five areas that respondents identified that CFT should devote its resources to:

Thank you to everyone who took the time to complete the recent member survey. We were pleased with the number who took part – with 34% of the Tasmanian CF population responding (either themselves or via parents).

The latter half of the survey also contained questions for teenagers with CF or their parents, about the care received in the Paediatric CF Clinics and the results have been given to the Statewide Paediatric CF clinics for their action.

UPDATING OUR STRATEGIC PLAN

• •

At a planning session in late September the CFT Committee used the survey outcomes to update the Association’s Strategic Plan. CFT’s vision and purpose remain unchanged. The feedback we received confirmed that our existing strategic plan’s strategic pillars were appropriate. Therefore these pillars: services, advocacy & education and fundraising had only slight wording changes. If you’ve seen a copy of our Strategic Plan you will recognise that it is in the shape of a house. Importantly, we have moved our key stakeholders to be the underpinnings of the house – these are our corporate partners,

CFT Committee members at the Strategic Planning Session - September 2017

individuals, volunteers, community groups and the CF Federation. “So what does all this mean to me as a member?” we hear you ask. As in any organisation, the Strategic Plan provides the framework for what we do. Our staff produce a yearly operational plan which details the actions to be taken to meet the objectives in the Strategic Plan. This keeps CFT focused on our vision and purpose and actions to achieve it. The updated CFT strategic plan can be found at www.cysticfibrosis.org.au/ tas/annual-reports OUR VISION Lives Unaffected by Cystic Fibrosis OUR PURPOSE To help Tasmanians with CF to live longer and healthier lives and to provide support and advocacy for the CF community.

STRATEGIC PLAN 2018 - 2022

VISION Li ve s u n a f fe c te d by Cyst i c Fi b ro si s

Our Vision Lives unaffected by Cystic Fibrosis.

Our Purpose To help Tasmanians with CF to live longer and healthier lives and to provide support & advocacy for the CF community.

Our Details

Delivering services to Providing advocacy and Maintaining a financially robust , memberour members that meet education for people their needs & provide living with CF & raising focussed organisation community awareness with an enthusiastic support team of staff, volunteers & supporters. » Understand & respond to the future needs of our members. » Provide services for our members with CF to assist them in managing their physical & mental health and well-being. » Provide opportunities for members to connect with one another. » Contribute to national research programs.

SERVICES

» Build partnerships within the healthcare sector to improve standards of care. » Influence policy within Govt & the CF Federation. » Improve media understanding of CF to communicate our message more effectively. » Deliver community awareness & education campaigns. » Provide educational resourcces for the CF community.

ADVOCACY & EDUCATION

» Develop a broader and more diverse fundraising base. » Deliver new and innovative fundraising initiatives. » Facilitate increased community fundraising. » Partner with corporate supporters, other community organisations and private benefactors.

please contact us at 2/38 Montpelier Retreat, BATTERY POINT TAS 7004 Ph: 03 62 346085 Email: general@cftas.org.au www.cysticfibrosis.org.au/tas

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INDIVIDUALS

VOLUNTEERS

We strive to put our members at the heart of everything we do.

Inclusive We will support all members equally regardless of their circumstances or location.

Compassion We will demonstrate compassion and show respect to our members.

Integrity

Good governance across all aspects of the organisation Sustainable finances A skilled and passionate team of staff and volunteers Active and engaged members CORPORATE PARTNERS

Member Focussed

FUNDRAISING

To learn more about Cystic Fibrosis Tasmania

Our Values

S T R AT E G I C P I L L A R S

Direct financial subsidies to members; Loan of medical equipment such as nebulisers; Building partnerships with the healthcare sector to increase standards of care; Raising the understanding of CF in the general community; and Keeping members up to date on research and clinical trials

COMMUNITY GROUPS

CF FEDERATION

PARTNERS FOUNDATIONS

Some key outcomes of the survey included: • 87% prefer regular electronic newsletters emailed to them; • 79% regularly read CFT News (either printed or electronically) • 13% didn’t know that the equipment provided through clinics such as nebulisers were supplied by CFT; • 74% of respondents knew about Little Day Out; • Only 23% of respondents knew about CFA’s Consumer Connect website.

We will apply the highest standards of ethical behaviour and be accountable in all that we do.

Va l u i n g O u r p e o p l e We strive to provide a supportive, professional workplace & nurture the wellbeing of staff and volunteers.


ran a “home shopping” market style fundraiser at her house in 2011. This event with twelve stalls was highly successful from both a fundraising and awareness raising perspective. Mandy has also been extremely generous with donating prizes to all of our events, often without being asked to.

NATIONAL ACCOLADE FOR CFT VOLUNTEER The second annual CFA Patron’s Awards were held in Sydney at the end of November. Long term CFT volunteer, Mrs Mandy Lewis, was presented with the “Volunteer of the Year Award”. Presented by CFA’s Patron, His Excellency, Sir Peter Cosgrove, Governor-General, these awards were created to give recognition to the many outstanding contributors to the Australian CF community.

Wriedt, became CFT’s inaugural Executive Officer. Knowing that CFT was only a small Association, with no Government funding, Mandy started helping out. Mandy’s contribution has been diverse. She has helped out in the CFT office, undertaken tin rattling, and sourced prizes for lunches and dinners. Mandy has been a volunteer for every CFT fundraising event held in Southern Tasmania in the last 8 years, often not leaving until everything has been packed up. In 2016 and 2017 Mandy was the organiser of the annual 65 Roses Hobart Ladies Lunch, a task which she took on with such enthusiasm that new event fundraising and attendance records were achieved.

Mandy Lewis was nominated by CFT for her selfless long term commitment to volunteering. Not just content with helping out Mandy’s connection to CFT began in 2010 when her close friend, Paula with these events Mandy even

RETURN UNWANTED MEDICINES Do you have old medicines lying around home that you no longer need? It’s important that they are disposed of properly. More than 5,000 Australian children are

What’s remarkable is that Mandy has done all this whilst having personal challenges herself. In 2007 with three children under 4 years of age, Mandy’s husband passed away unexpectedly. Despite looking after her growing children on her own in addition to running a home-based business, Mandy still made time to volunteer. Living with a chronic pain condition for several years also hasn’t been a barrier to her help. One of our quiet achievers, Mandy is very humble about her achievements. Indeed, even after having been presented with her Award by the Governor-General, she remarked that she “felt like she hadn’t done that much”. Nothing could be further from the truth. It is people like Mandy (and last year’s Community Fundraising Award winner, Denny Fleming) that are the true backbone of our Association. On behalf of all of the members and supporters of CFT, we would like to congratulate Mandy on this well deserved award.

hospitalised each year as a result of thrown out in household garbage medicine poisonings. or put down the drain or toilet. In these cases the medications end “Return Unwanted Medicines” up in landfill or waterways. Take (known as the RUM project) is a moment to following the three a Federal Government initiative simple steps below to help to aimed at providing everyone with minimise the risk of unintended a simple, free way to dispose of poisonings, medication mix-ups at expired or unwanted medicine. the same time as doing your bit to help the environment. It’s better for the environment if these medicines aren’t simply

CFT NEWS 11


THANKYOU FOR SUPPORTING US! LIONS CLUBS CREATE A NEW RECORD We have been overwhelmed once again by the support of Lions Clubs throughout Tasmania during our annual 65 Roses fundraising campaign. Although the 65 Roses campaign is no longer an official state-wide project for Lions Clubs, the majority of them continue to support Cystic Fibrosis Tasmania. As a small charity we are extremely grateful for their continued support. Collectively this year the Clubs raised nearly $15,000 which is a new record. Lions Clubs members rattle tins for us, sell merchandise and hold sausage sizzles, quiz nights and other events to raise funds each May. Many Clubs also make donations from their own funds to boost the total. If you know someone who is a Lions Club member, please take a moment to thank them personally for the effort they put into helping out our Association. It’s important that they understand our members recognise the work they do and what it means to us. Thank you Lions Clubs!

SUGAR ROSES A DELIGHT BY ANY OTHER During Term 3 of this year, the School of Business at Elizabeth College ran the $20 Boss programme. Students worked in small teams to create their own business. Each group was given $20 from the College in seed funding to create and run their own businesses at the start of the programme. At the conclusion of the program, the students were asked to repay the seed fund with any left-over money being donated to a charity of their choice. Year 12 students Georgia Lancaster and Addison Howells created Sugar Roses, a business that made and successfully sold rose-water flavoured Turkish delight. Using a recipe from her grandmother, Georgia toiled away late into the night and on weekends over a three-week period, making and packaging over 600 pieces of the soft, sweet, sticky treat. “It’s not easy living with a serious health condition and CF doesn’t get the sort of attention that other health problems do.” said Georgia. “We thought that what CFT does in providing things like free nebuliser pumps and family activities through Little Day Out is really great, and we wanted to help them do that.“

Scott Lancaster, Georgia Lancaster & Addison Howells

And help out they did. Once their seed funding had been repaid, they were left with $288 to present to CFT – the highest amount raised by any of the teams. Well done Georgia and Addison!

KIDS GO CRAZY….. It was another successful year for Crazy Hair Day thirteen schools and early learning centres taking part in this year’s taking part in this fun event. We know that kids just love Crazy Hair Days – although we aren’t as sure that the parents like it as much as they struggle to come up with eye catching creations. We are delighted to say that approximately $2,000 was raised this year. A specific mention must go to St Helens District High School who raised an incredible $685! Not long after the start of the 2018 school year we will write to all schools and child care centres letting them know how they can take part in Crazy Hair Day for CFT. When we do this we will let you know – it’s always useful for parents to encourage their child’s school or child care centre to take part. 12 CFT NEWS

CFT news summer 2017  
CFT news summer 2017  
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