CFTNEWS
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Consumer Connect is a new resource that’s been made available to members of the CF Community around the country by Cystic Fibrosis Australia. Accessible through a link on the “CF Lives Matter” site at cflivesmatter.org.au, Consumer Connect is another great tool to put you in touch with others within the CF community.
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
To access Consumer Connect you simply sign up by clicking the link on the CF Lives Matter page. You will then have the chance to read blogs from medical and allied health professionals, take part in video chats with others in the CF community, view video updates on matters of interest and be part of a forum discussing topical issues and breakthroughs in the treatment of CF. As the videos will be stored online it’s will be handy to log onto Consumer Connect from time to time to see what resources are available that may be of interest to you. In the future, Consumer Connect will also provide a Q&A advice hotline. Unfortunately this won’t be in real time as it’s too much to ask of our hard working clinicians, researchers or allied health professionals. But the target is to have questions answered within 72 hours. Please remember that anything that is highly specific in nature we would still recommend that you raise with your clinic staff directly as they will have a full understanding of your medical history. This is especially important if your question relates to a sudden change in your health. But this feature will give you a chance to ask about things you may not understand about CF, or may not have time to ask at your clinic appointments. This initiative was made possible by funding provided to CFA by L J Hooker and the generous assistance of new tech company Padlokt. Make sure you take advantage of this great new resource for you and your family.
CFT NEWS 1
A NOTE FROM OUR
EXECUTIVE OFFICER Our sincere apologies that it’s been a while since you last received a copy of CFT News. With the Roaring Twenties Gala Ball being so close to the end of the year, the workload associated with that meant it wasn’t possible to put out an issue prior to Christmas. Late last year there was also some discussion about the possible move to a national magazine amongst members of the CF Federation. Whilst this continued early in the year, we put our plans on hold to avoid doubling up. But the decision of CFV and CFNSW to merge delayed this initiative. When it does happen, which we hope will be later this year there will still be local content so that you can know about our member services, events, inspirational stories and more. Currently we re-print a number of stories each edition from other CF newsletters around the country so this will save us, and many other CF Associations time and money. We will keep you posted. You may also have noticed that the CFT office hours haven’t been as regular over the last few months. Unfortunately, with a small team of just two part time staff members who equal just 1 FTE, when one person is away or sick, it does impact on our opening hours. I had an accident on Anzac Day and tore my hamstring off the bone, as well as doing other damage. As a result I had several weeks unexpectedly off on sick leave. This was then followed by working from home whilst on crutches and not being very mobile. My apologies for any members who were inconvenienced during this time. Unfortunately, it did mean some delays in responding to phone calls and emails and during this time we also had an email outage. It made us realise how much we rely on technology to stay in touch these days! Another 65 Roses Day is done and dusted and it’s fair to say that this one was challenging – especially as I was
2 CFT NEWS
trying to co-ordinate our volunteers and resources from home. I wasn’t able to deliver extra merchandise to stalls when they needed it, or fill in gaps on rosters as I usually do. It’s fair to say I was frustrated by this, as I am so passionate about ensuring the 65 Roses campaign is as successful as it can be. Our numbers of volunteers were lower in the South of the State this year which was disappointing, but we continued to have strong support from Lions Clubs around Tasmania which we are grateful for. The first half of the year has been extremely busy with a range of events. The 65 Roses High Tea in Launceston was a sell out event once again, and the 8th annual 65 Roses Ladies Lunch proved popular. The third annual Quiz Night was a great success and we were delighted to welcome a new community fundraising event, Breathe Fit for CF, an outdoor fitness class. Breathe Fit is a great example of an event organised by a CFT supporter, rather than by our Association itself. With our limited staff and many of the same volunteers helping out with our regular events, these new initiatives, run by others are really important to our fundraising efforts. As I write this there are also lots of schools and child care centres holding Crazy Hair Days to benefit CFT. Thank you to the many parents who encourage their children’s centre or school to be involved in this activity. We know it’s a fun way for schools to raise funds for CFT, but also importantly, to raise awareness about what CF is. There have been some exciting developments nationally for members of the CF community, particularly in relation to consumer advocacy and bringing members of the CF community together. Most recently, Cystic Fibrosis Australia launched Consumer Connect. This portal (or site) gives you, as a member of our community, the chance to reach out to others who live with CF or care for
CFT Executive Officer Paula Wriedt following her recent accident.
someone with it. Read more about it in this edition of CFT News and then jump online and register to be a part of this great new resource. As you will have read both the President, and myself, note on many occasions, our volunteers are the heart of so much that we do here at CFT. This is especially true in many Not for Profits, but particularly in one of our size. Without you, we couldn’t hold the events that we do. We wouldn’t raise as much money as we do in the 65 Roses campaign each year. And subsequently, we couldn’t support our CF community in Tasmania as we are able to. So I’d like to finish with a well known quote – the author of which is unknown I understand, but one which I think sums up the worth of volunteers to our Association so well. “Volunteers aren’t paid - not because they are worthless – but because they are priceless”.
PAULA WRIEDT EXECUTIVE OFFICER
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
member survey, which will be coming out in the coming months. We want to understand what’s important to people with CF and their families, to ensure that the services CF Tasmania offers, the positions that we take and the decisions that we make reflect what matters to the CF community, now and into the future. Completing the survey won’t take as long as the Census did, and I’m hoping we don’t experience the same sort of IT gremlins that bedevilled the Bureau of Statistics, but the survey will take you more than a couple of minutes. I would encourage people to take as long as they need to fill it in, to ensure that their voice is heard by the Association that exists to serve them and, when required, to speak on their behalf.
PRESIDENTS’ REPORT CFT President Scott Lancaster & son, Callum, after taking part in CF Breathe Fit
In addition to the services we provide directly to people with CF, like free nebulisers and assistance with the cost of attending national CF conferences, one of CF Tasmania’s key functions is to represent the interests of the Tasmanian CF community to the general public. Over the years, greater awareness of CF amongst the wider community, and within political circles, has led to significant improvements in the clinical care available for people with CF in Tasmania, as well as the support given to the CF community through CFT. We take the availability of paediatric CF clinics for granted now, but it doesn’t seem that long ago that I found myself sitting in the office of the State Government’s Minister for Health alongside the then President of CFT, Mark Cage, as Mark forcefully argued the case for such a service. More recently, Cystic Fibrosis Tasmania has made valuable contributions to the national campaigns for affordable access to new medications like Kalydeco and Orkambi through the Pharmaceutical Benefits Scheme. In representing the Tasmanian CF community, CFT is very fortunate
to have as our Executive Officer a former Member of Parliament, who has considerable experience when it comes to working with governments of all political persuasions and the news media. But as invaluable as her skills and experience are, she is but one voice. Which is why our focus – and that of Cystic Fibrosis Australia – has been on making it possible for the voices of our members to be heard directly. Ten Tasmanians have attended CF Australia’s Consumer Advocacy Network training (CF CAN) and over the past 18 months members of the Tasmanian CF community have been heard on the national stage, through meeting senior Government figures at rallies in Canberra, or having their story told through coverage in the news media. We may be a small state with a relatively small CF community, but I can assure you that CF Australia are genuinely appreciative of the contribution that the Tasmanian CF community has made to their advocacy campaigns.
Live, long and prosper.
SCOTT LANCASTER PRESIDENT
YOUR CFT COMMITTEE Following the AGM held on Thursday 27 April 2017, the following is the list of members of the CFT Committee (formerly known as the Board). Two Committee positions are currently vacant. If you are interested in joining the Committee please contact CFT at general@cftas.org.au. President: Scott Lancaster Vice President: Judi McGee Acting Treasurer: Scott Lancaster Secretary: Vacant Members: Nicole Bryant Bridget Caplice Sean Collins Sam Fox Aaron Gay Dr Alison Thurstans
Another way that members of the CF community in Tasmania can make their voice heard is by taking the time to respond to the online
CFT NEWS 3
65 ROSES DAY 2017 Thankfully the sun was shining this year on 65 Roses Day, Friday 26th May 2017 and that always makes the jobs of our volunteers easier. It was tremendous to see some new members out collecting for us this year. We held several merchandise stalls in Southern Tasmania and one in Launceston during 65 Roses Week. Unfortunately some in the South had to be cancelled due to a lack of volunteers and this impacted on our revenue. When our members who live with CF volunteer on 65 Roses Day it always attracts interest from donors. A special mention must go to CFT member Lena, 9 and a half, who staffed a merchandise stall with her Mum, Megan Rozynski, in Centrepoint during 65 Roses Week. Lena had a big smile for anyone who donated and was very confident in sharing her story about having CF with anyone who was interested. Well done and thank you Lena for this great effort.
We were also grateful to have the continued support of the Lions Clubs statewide once again. Many of the Clubs undertook tin rattling, a few held stalls and some got very creative with their fundraising efforts. The City of Burnie Lions Club held a successful quiz night and raised over $2,000 in addition to their tin rattling and a sausage sizzle. Ulverstone Lions Club had a street bbq and musical event for the second year.
Every contribution to our 65 Roses street collections makes a difference. Even just an hour’s time rattling a tin helps us to spread our reach and increase our fundraising efforts. So next year when we put a call out for volunteers please consider helping out – an hour in your lunch time, before or after work, it all helps to make a difference.
LAUNCESTON 65 ROSES DAY A PERSONAL PERSPECTIVE FROM CFT MEMBER DONNA EMERY On Friday 26th May we held a stall in Meadow Mews at Kings Meadows for our 65 Roses Day fundraising in Launceston. We had 8 wonderful, generous volunteers (Carolyn, Leanne, Luke, Linda, Kerri, Mollie, Shelby and myself) who gave up their precious time to help raise money and awareness for Cystic Fibrosis Tasmania. It was a beautiful day and there were plenty of people around donating and purchasing CF merchandise, making this a great year for fundraising. It feels so rewarding to be part of such a caring group and volunteer 4 CFT NEWS
Donna and Linda Emery
time to CF Tasmania and I would like to thank the people who volunteered on the day and also those who came along and donated money. We raised almost $500 which is fantastic! We would love to hold more stalls in Launceston next year so that we can raise more awareness and
much needed funds, so please get in contact when you see the call for volunteers from CF Tasmania! It’s easy and CFT provide all the necessary equipment – we just need more people to assist to make additional stalls worthwhile.
HIGH TEA SELLOUT SUCCESS The “65 Roses Ladies High Tea”, held in Launceston on Sunday 13 May 2017, was another successful event for 2017 with tickets to the event selling out in just 2 weeks. Those who attended the Mercure were treated to a glass of bubbles on arrival and some delectable High Tea treats throughout the afternoon. Our Lucky Door prize of 2 night’s accommodation at ‘Suntrap Cove’, Bicheno was a popular item and our thanks must go to Louise and Rob Widdowson for their donation and their continued support of CFT. Rob and Louise have sponsored this event since 2012 and we look forward to their association with us in years to come. Our raffle and silent auction had a great selection of items including some incredible photographic packages donated by Phillip Kuravita Photography, beautiful canvas prints from Amanda Brooks, Handbags from Squidgi Handbags and beautiful jewellery donated by another of our long term sponsors, Sue-Anne Cornes from Envy Jewellery. A special thank you to Newstead Flowers for donating all of our roses for the day, we had ladies lined up to purchase these and they certainly helped our fundraising on the day.
Leanne Newson and Donna Emery
2017 Launceston High Tea Room
Leanne Newson was our guest speaker for the afternoon and made a huge impact on all our ladies with many visibly moved by her speech. Leanne shared with us some of her story bringing up her two sons with CF- in a time before much of the infrastructure for support and information was available. Her journey and that of her sons, certainly highlighted how treatment, knowledge of CF and support have changed in the last two decades. The 2017 High Tea was our most successful to date with nearly $5900
raised, an increase of over $2,000 on the 2016 event. Our thanks must go to the hard working committee of Donna Emery, Leanne Newson, Leanne Scott, Danielle Langmaid, Karen Hawkins, Sandy Garwood and Judi McGee, and a special thank you to Kalli Westwood for the donations she obtained for us. We look forward to a bigger and better event next year with an exciting new and larger venue. We look forward to seeing all of our attendees and new ladies next year.
QUIZ NIGHT FUN The CFT Quiz nights continue to be popular events each year and this one was no exception. Held at the Lindisfarne Rowing Club on Saturday 25th March 2017, with 125 guests it was nearly a sell-out. You never know what to expect at a CFT quiz night. And how could organisers possibly beat last year’s funny, albeit, frustrating “half time activity” which was building a sky scraper out of marshmallows and dried fettucine? Well somehow they managed to trump that. This year’s challenge was one that created a lot of competitiveness amongst teams and so many laughs. Guests were given sticky tape, scissors and newspapers and had to make outfits that were
then modeled by team members. Even the Rowing Club’s volunteer bar staff got into the spirit of competition, crafting themselves paper bikini tops and hula skirts! Sincere thanks to Denny Fleming and Priscilla Stansfield who are the driving force behind these successful quiz nights. Each year they rope in family and
friends to assist in the event running smoothly and it is greatly appreciated. Thanks to everyone else who volunteered to make this a success and to Quiz Master for the evening, Tim Hogan. Another fun night that raised nearly $4,000.
CFT NEWS 5
65 ROSES LADIES LUNCH Whilst numbers for this year’s 8th Annual 65 Roses Ladies Lunch were down on last year’s event, it certainly didn’t detract from an enjoyable event and a great fundraising result under the “Ladies Who Lunch” theme. Following our Executive Officer’s untimely accident, Brian Ritchie, well known Bass Player with Violent Femmes, generously offered to MC the event. Brian, who has lived in Tasmania for over a decade, has a personal connection with CF. His son, who is also a musician and artist, lives in the USA, has CF and underwent a successful transplant four years ago. We greatly appreciate Brian sharing his story with our guests. This year’s guest speaker, Mandy Maree, ensured there was not a dry eye in the room, when she spoke honestly and openly about her shock of learning that one of her three children had been born with CF, when they were living in Ireland in 2002. Daniel, now 14, hasn’t let CF get in his way of any of his pursuits and is an avid sailor. In January this year, together with his sailing partner, they created Tasmanian sailing history by winning the Australian Championship in the Flying 11 skiff class. They are the first Tasmanians to ever win this event in its 50 year history! This is an incredible achievement – no wonder Mandy and the rest of the family are so proud. There were plenty of opportunities for guests to contribute to the event’s fundraising efforts with live, Dutch and silent auctions, a raffle, the hugely popular Lucky Rose Tree, “guess the chocolates” game and opportunities to win a bottle of alcohol by tossing a gold coin the closest to it. Guests got to take home delicious cupcakes generously donated by our supporters at 4 Lunch as a special treat. Thanks also to Kate Hill Wines and Sue-Anne Cornes (Envy Jewellery consultant) for once again having trade tables at the event and your generous donations. 6 CFT NEWS
It’s always fun for guests to be able to purchase items on the day. The work that goes in behind the scenes for events such as this one shouldn’t be under-estimated. This year’s lunch was organised by long time volunteer Mandy Lewis who did an incredible job in pulling it all together. Mandy doesn’t have a connection to CF, yet as a lifelong friend of our Executive Officer, she has embraced CFT as a cause close to her heart. She is always first to put up her hand to assist with any of our events and we value her ongoing contributions. Other Committee members included Casey Lange along with CFT staff, Paula Wriedt and Melanie Wright. Thank you all.
Di for your ongoing efforts.
Special mention must go to Diane Bryant who despite not being able to attend this year’s event, assisted the Committee and went to considerable effort securing prizes – and she’s highly successful at it. Di is someone who doesn’t really take “no” for an answer and she openly shares her story about her family’s journey with CF to encourage others to donate. Thank you
This year’s event raised $10,400 for CFT – a fantastic effort which exceeded our expectations. Thank you to everyone who contributed through volunteering, donating and attending. Attendance was lower this year, and many people said it was simply too hard for them to get the day off work. The Committee will now consider moving the event to a weekend in future years. Stay tuned.
65 ROSES CHALLENGE SUCCESSES Four teams took part in this year’s 65 Roses Challenge, collectively raising $9,460 for CFT. Another CFT supporter, Krista Dennis, also undertook her own challenge, raising $1,741. So all up this year’s challenges raised over $11,200. CFT’s Ambassador Carrie Leppard, proved once again how to be come up with an engaging and fun challenge with Team Charlotte raising just over $5,000, placing them as the second highest fundraisers in Australia for the 65 Roses Challenge. Charlotte, 7, decided that this year she would like to meet and have her photograph taken with 65 different dogs. Family and friends came to their assistance, as did the Dogs Homes of Tasmania who warmly welcomed them to their shelter. On 65 Roses Day Team Charlotte headed to Sandown Village where residents of the aged care facility were delighted to meet Charlotte and the dogs of many staff who had been brought in for the occasion. Despite having just had her second daughter in just early February, CFT Committee member, Sam Fox, wasn’t going to let that stop her running 65kms in her Challenge this year. When many would use new motherhood as an excuse to stay inside, Sam often bundled up both Scarlett (3) and newborn Harriet, for a ride in the pram to reach her goal of 65kms during May. Family and friends got right behind this great feat and helped Sam’s “Running for 65 Roses” challenge raise nearly $3,400. What’s more eye catching than 65 people running decked out in red? 80 supporters running in the City to Casino dressed in an array of red outfits including CF T Shirts, red wigs and even red tutu’s! A great family event the 80 enthusiastic participants got up early on a Sunday morning to take part in Hobart’s most well known fun run. It was a great way to raise funds (the team collected over $660) and had a great story in the Mercury Newspaper. A great way to raise awareness about CF – thanks to all of the team members. Thank you to everyone who took part in a Challenge this year. We look forward to more creative 65 Roses Challenge ideas in 2018. CFT NEWS 7
ROARING 20’S GALA BALL The Roaring 20’s Gala Ball held in November last year was the largest event that CFT has held in its history. Nearly 180 guests, nearly all dressed in costumes, enjoyed the wonderful food and the terrific atmosphere created by the Roaring 20’s theme. The night opened with a cocktail bar thanks to our generous sponsors at Peter Carr Advisory. This proved to be a valuable addition to our fundraising efforts – for just $5.00 guests enjoyed Cosmpolitans, French Martinis and Japanese Slippers. Guests mingled and sipped on cocktails whilst listening to local jazz band Nadira and Friends. We had raised nearly $900 by the time guests sat down to watch an energetic Great Gadsby Style dance by a large troupe of dancers from the House of Dance. The “Wall of Wine” saw some lucky guests take home bottles of wine up to the value of $80 for just a $20 investment. With bottles disguised in brown paper bags like the Prohibition Era, guests took a lucky dip to get their bottle. This proved a fun and popular addition to the night with all 100 bottles selling out before the end of the evening.
Ambassador. This topped off an incredible year for Carrie following her win in the Tadpac Print Services to the Disability Sector Category in the Tasmanian Young Achiever Awards. Guest Speaker, Jack Dyson, at just 19 years old, inspired everyone in the room with his speech appropriately titled “Iron Lungs – Defying the Odds”. With a strong determination several years ago Jack turned his health around by becoming a committed gym go-er and getting interested in body building and weight lifting. Jack’s efforts transformed his once lean body – increasing his BMI and importantly, increasing his lung function substantially. The end result has been much less frequent hospitalisations and a new zest for life, including working at Zap Gym. Thank you Jack for sharing your story – we are sure many CF parents and young people were inspired by “Iron Lungs”.
have seen her name mentioned in relation to other events that she’s assisted with such as the Quiz night. Roped in by former Board member, Denny Fleming, several years ago Priscilla continues to show a passion for helping CFT and a great flair for organising these types of major gala events. Thank you Priscilla!
Priscilla was assisted by the hard working Denny Fleming who continues to help CFT with so With Mojo entertaining guests many events. Other members of until midnight the dance floor was the organising Committee included packed and the feedback from Casey Lange, Mandy Lewis, Carrie guests was that this was one of Leppard and CFT staff members our best events ever. From a Melanie Wright and Paula Wriedt. fundraising perspective it was In the days leading up to the event Special presentations on the night certainly successful with $25,500 many others (mainly family and were given to Angie Hay for her raised – a great result. friends) were drafted in to help with tireless work in gathering together There is always a main driving force moving items to the venue, set up so many donations for the event; behind these events. In this case and pack down and volunteering on Mandy Lewis for her continuing Chair of the Event Committee, the night. Too numerous to mention contributations to CFT events Priscilla Stansfield, was that person. all by name – a sincere thanks to and Carrie Leppard was formally Priscilla has been a volunteer for all of you for helping to ensure the announced as CFT’s first ever CFT for many years now - you would event ran smoothly. 8 CFT NEWS
BREATHE FIT FOR CF From the very first phone call that Nick Allie made to the Cystic Fibrosis Tasmania office, it was obvious that he had the passion and drive to create a successful new community fundraising event for CFT. Nick, a personal trainer, had visions of running a large outdoor master fitness class. For him it was not only about raising money but importantly, also awareness about CF. But then again, Nick had a connection to CF that made this a – 65! Many others came along very personal quest. to support the event and looked on as participants become more Community fundraising is very challenged with the exercises as important our Association, as the class went on. It was terrific we are limited by the number of to see so many people involved, events we can organise ourselves especially a number of families each year with our small staff with young children – showing resources. So when Nick Allie that being active can be enjoyed came and told us about his idea by everyone in the family together. for a new fitness based fundraising event for CFT, we were ecstatic. After the 45 minute class, that had many participants struggling Of course many in the CF to catch their breath, a bbq was community already understand the available thanks to members of the importance of maintaining a good Rotary Club of Moonah. Nick’s team fitness regime as part of their had thought of so many details to healthcare plan. Nick, who owns a make this a great family day out personal training business, Nick’s - with many supporters staying Strength and Fitness (NSF), was behind and enjoying their barbequed determined to get the message sausages on the picnic rugs they’d out about the challenges of CF to had donated by OfficeWorks. a wider community. Thanks to the hard work of Nick, Nick’s motivation was his partner his family and friends, the day Sarah’s nephew, Austin, 15, was a great success. Together who has lived with the many with the raffle that was supported challenges of CF since birth. by so many generous donors, Austin even starred in a television Breathe Fit for CF raised $3,450. advertisement that Nick had Congratulations and thanks to produced with the help of a friend Nick Allie, his very supportive that aired on TDT in the weeks partner, Sarah, and all of their before Breathe Fit for CF. helpers for making this an event that was so successful. Members On Sunday 8th March, which have already asked when the next thankfully was a beautiful sunny one will be …. stay tuned. day, 65 people took part in the outdoor fitness class at (Note: If you are interested in Montrose Bay Park. What an personal training check out “Nick’s appropriate number to take part Strength and Fitness” on Facebook).
GOODIE BAGS FOR CF CHILDREN We were delighted to receive a visit from a couple of students from the Friends School late last year. The students, Sienna and Lewis, had taken on learning about CF as one of their projects as part of some of their school work. They came up with the idea of making goodie bags for young CF patients when they are in hospital. The bags contain items like pencils or crayons, stickers, toys and food items. Thank you to these students for their generosity and for brightening the day of some of our members when they have to be in hospital. They have been well received by the children, with one mum recently posting on social media a picture of her happy daughter with one of the goodie bags. Lovely!
CFT NEWS 9
S C I N I L C E H T FROM MEET KIRRILEE WATERHOUSE It’s a pleasure to have the chance to work with the families of children with Cystic Fibrosis whilst Nicole takes leave to finish her PhD. I feel fortunate to work with such a great team of doctors, nurses and allied health professionals across the state that are all so passionate about CF care. I’m qualified as an Accredited Practising Dietitian (APD) and have worked for the Tasmanian Health Service for over 7 years, since graduating from Monash. I chose to be a Dietitian because I love helping people and I really, really love food! I have specialised in paediatric nutrition and undertook a Certificate in Paediatric Nutrition and Dietetics at the RCH in 2011/12. I also spent some time working as a dietitian with the Adult Cystic Fibrosis team for about 2 years in 2013-2015. My areas of practice at this time are to provide support to the Paediatric CF services across Tasmania and to help coordinate treatment for
TASSIE PHYSIOTHERAPISTS ON A BELGIAN EXPERIENCE. As much as Jan (Paeds CF physio), Cat (NW physio) and Jen (adult CF physio) would all love to say they recently had a trip to Belgium to experience autogenic drainage taught by the guru, alas it was only to Melbourne. However they didn’t take away from the excitement, and for some of us had a “star struck” moment when we first listened to Dr Filip Van Gunderdeuren speak!
Kirrilee Waterhouse
individuals with CF and their families. I also provide nutritional assessment and education, and help to optimise nutritional intake for kids with CF. I attend clinics in each region and see children on the ward in Hobart, where I am based, and provide support to the Dietitians in Launceston and Burnie. Recently another Dietitian, Rene, came on to work together with me in the coordinator role. She is based in Launceston and will come to some of the clinics in all parts of the state, so some of you will meet her.
I’ve enjoyed meeting all the kids with CF, and their families since I started in late September last year.
When I’m not at work I’m usually spending time with my husband, our two year old girl and our West Highland
KIRRILEE WATERHOUSE STATE-WIDE PAEDIATRIC CF COORDINATOR AND DIETITIAN
technique to teach and to learn, was autogenic drainage. I urge any of you, if you have not had a discussion with your physiotherapist about autogenic drainage, to use this article as your ice breaker.
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Be kind to your airways. Coughing is like graffiti to your lungs. Don’t be surprised if your physio starts asking you to huff more than cough. You should never block your cough, but if you can wait until your secretions are in the larger airways, you will be much kinder to your airways;
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Regular airway clearance has more benefits than just secretion clearance, even if you are not productive of sputum you are developing a habit, just like cleaning your teeth. Then, if you do become unwell, you will be used to performing your airway clearance and feel ready to embrace treatments rather than battle treatments
Autogenic drainage is a technique used from early infancy in Belgium in Cystic Fibrosis. It is obviously assisted autogenic drainage at that age, but from the age of 4 or 5 Filip is teaching independent techniques. The Belgium Government provides a physiotherapist to visit twice a day in the homes of infants with CF diagnosed early!!
It is a technique that utilises some key principles of airway clearance to help Yes, we confess, physiotherapists can get air behind your secretions, and get very excited about topics that are then you use your air flow to pull the not remotely interesting to others, and secretions closer to your throat to make in particular when it involves sputum. them easier to spit out. As well as Dr Brenda Button, possibly the best physio in the world, we heard Some of the take home messages: from Dr Filip Van Gunderdeuren, a physiotherapist who was mentored by • Persist with autogenic drainage Jean Chevallier, the man who invented from an early age, even if it is not autogenic drainage. productive of copious secretions you will still be learning more about One of the techniques that has your airways and understanding always been known as a difficult how your airways work; 10 CFT NEWS
Terrier, “Brie”. Cheese is my favourite food (hence the dog’s name!). We like to walk on the beach, visit the ducks and go out for brunch or coffee. I also really enjoy cooking all sorts of things, savoury and sweet, but I particularly like making birthday and wedding cakes for family and friends. Yes, this dietitian makes BIG cakes! I also love to travel, our last big trip was to Japan when our daughter was 7 months old.
Ask your friendly physiotherapist if you want to know more, you know we are always happy to talk about sputum. Article written by Jenny Hauser, Senior Physiotherapist, TACFU.
(L-R) Jennifer Summers, Christy Stone & Gaylene Bassett
CF NURSES CONFERENCE The Australia and New Zealand Cystic Fibrosis Nurses hold a conference every two years; Last year it was hosted by the Tasmanian nurses in Launceston in August. We were due to host the conference in 2018 but the 2016 hosts, Adelaide, had to withdraw in early 2015. So we were moved up the list and organised a conference of which we were very proud. With only four CF nurses in Tasmania, our organising committee was small but committed and we were led by Gaylene Bassett, Paediatric Clinical Nurse Specialist (NWRH). The remainder of the committee comprised of Rowan Bridley, Adult Clinical Nurse Specialist, (RHH); Christy Stone, Paediatric Clinical Nurse Specialist (LGH); Nicole Saxby, Tasmanian Paediatric Cystic Fibrosis Coordinator; and myself. Given our geographical spread, all our planning meetings were held via a Telehealth link up, with no face to face meetings being possible. Our conference theme was “Towards the Future” and was held over two days. To help CF nurses continue caring into the future, we put together a program based on the themes that were raised after the 2014 ANZ CF Nurses conference. Topics presented included:• Understanding and sharing experience of emerging pathogens and new therapies • Transplantation • Remembering to care for the pieces we may forget • Learning how to care for our teams and ourselves while under pressure so that we can teach those affected how to manage the increasing therapeutic, emotional
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and social burden of this chronic multi-systemic condition Transition – a life-long process Planting the seeds for succession planning
We had a total of 72 delegates attend from all states of Australia, as well as one nurse from New Zealand. These conferences are valuable for us to network with other nurses who do what we do, and to keep up to date with current developments. It’s wonderful to talk to other CF nurses and learn how they do things in their centres; this knowledge we can take back and use in our centres to improve the systems we already have in place. I’m always impressed when I speak to a group of nurses who have many hundreds of people with CF in their centres; it makes me grateful that I care for such a small group and that I can get to know the families so well. Nettie Burke, CEO of Cystic Fibrosis Australia welcomed us to the conference and the opening address was provided by Sian Ellett, a writer, speaker and meditation practitioner who lives with CF. Sian is a highly motivating speaker and we decided we would like to bottle her words and wisdom! If ever you get the chance to hear her speak, take it. Her choice to live her life in such a positive manner is truly inspiring; she has a blog, sianellett.com, where you can read for yourself about her passion for health and wellbeing. Other speakers included nurses, doctors, a social worker, a psychologist, a university lecturer in biochemistry and molecular biology and our paediatric statewide coordinator. We have many sponsors to thank including Vertex, Mylan, BIRD Healthcare, Nestle Health Science, Novartis, Pari, Pharmaxis, Technipro, for financial support, and Cystic Fibrosis Tasmania who provided our fabulous conference
bags. Megan Rozynski of Creative Hum was engaged to create a graphic identity for the conference including design and layout of the conference handbook and name tags. Megan is a member of CFT and mum to Lena (almost 9) who has CF. Whilst organising a conference like this one was a huge job, I’m glad we have done it and can proudly say we did a great job. I’m also glad that at the next conference in NSW in 2018, I can attend as a delegate, not an organiser, but have a new found appreciation for all that is involved in arranging such an event. Congratulations to Gaylene, Rowan, Christy, Nicole and myself – CF Nurses Rock! Article Written by Jennifer Summers Paediatric Clinical Nurse Specialist (RHH)
Don’t forget that if you do online shopping you can also donate money to our Association at the same time, at no extra cost to you. Shopnate operates in partnership with hundreds of retailers who will donate a percentage from each online sale to your nominated charity. You simply register with Shopnate, nominate CFT as your charity and download the “easy fundraiser” app. Every time you browse a store that is a partner of Shopnate a pop up bar will let you know how much from your purchase will come to CFT. It’s that easy. Register now at www.shopnate.com.au - it’s free for you but helps CFT. CFT NEWS 11
BIRTHDAYS AND TRANSPLANT ANNIVERSARIES
Remy Veska – 20 Charli Lovell – 27 Mark Britton – 29
APRIL Madelleine Clark – 4 Tyler Stretton - 5 JAN Scarlett Jesney – 10 Brooke Butterworth – 16 Wayne Alomes – 6 Liz Van Dongen – 16 Isla Pringles-Jones – 10 Kevin Clay – 25 Kaleb Dwyer – 11 Luke Emery – 27 Isaac Anderson – 12 Sarah Rushworth – 13 MAY Matt Langham – 22 Noah Donnelly – 1 FEB Jessie Jo Russell – 5 Ashlee Dean – 8 Ella Burrill – 10 Aleyna Harrison – 14 Leigh Richards – 23 Ethan Scarman-Turnball – 24 MARCH Daniel Newton - 2 Josh Holmes – 3 Hayley Triffett – 8 Toni Miles-Bennett – 14 Elizabeth Salter – 14 Joran Griffiths – 19 12 CFT NEWS
Matilda Rusher - 6 Simon Calvert – 12 Jane Hemsley – 14 Bella Speight – 24 Lewis Niekamp – 31 JUNE Oliver Kean – 1 Neale Atkins – 9 Beau Laycock-Shaw – 9 Alison Walters – 12 Aleena Alomes – 20 Tahyla Newton – 21 Jarrah O’Brien – 27 Scott Atkins – 29 Chris Newson – 30 (30th birthday)
JULY Walter Van Praag – 8 Megan Willis – 10 Alison Purton – 13 Wayne Enright – 19 Austin Leaman – 19 Wade Tennant – 23 Jack Dyson – 25 Matilda Taylor – 26 Luke Woolford – 29 TRANSPLANTS Toni Miles-Bennett – Lung transplant – 9th Feb
ACHIEVING MILESTONES James’ particpating in the Ross Marathon
Taking up running isn’t for everyone, but in this article Tasmanian James Kleining, who lives with CF, shares how running has become an important part of his life, as well as helping with maintaining his health.
clearance method, and unless it’s dark and raining it’s easier to motivate myself for a run than PEP.
My Dad’s 60th birthday was in May 2015 and to celebrate he wanted to get the family together and run in the Barossa Running Festival Half Marathon - the I started to run in 2013 after a number flattest course we could find! Both my of family members took up running as parents, my brother and I completed a challenge; and my CF team had also recommended I use exercise to maintain the half marathon - I finished with a time of two hours for the 21 kilometre course. my lung function. Afterwards I felt both hugely proud of my achievement but also thought I I am a 26 year old with CF; I try to could have pushed myself a little further. not let CF stop me doing anything I want. The long term prognosis is fairly After that I had in the back of my mind uncertain, but I strongly feel that - a whether I would ever be able to do bit like compound interest - even a marathon. Coming up with a New small positive moves today can be Year’s resolution for 2016, I decided magnified in decades to come. So I try to challenge the condition and maintain to take the leap and have a crack at my health with exercise, PEP and glaring a marathon. I decided on the Ross marathon - I’d heard it was lovely and at people with poor cough etiquette. not too hilly. This gave me 9 months to get ready, and if I pulled it off, I’d have a I began running with a “Couch to 5km” marathon under my belt a week before training app (I would recommend my 26th birthday. these to anyone) which took me from struggling to run for a couple of minutes to comfortably running for half an hour. To prepare I had to systematically break down and schedule how to gradually increase my mileage to prevent injury. I took to running regularly for its I searched for a training plan online to physical and mental health benefits. From this foundation I entered a couple help me work out the distances, and of fun runs - the City to Bay in Adelaide talked to friends who were experienced runners to get their insight and advice. and the City to Casino here in Hobart. I still got some minor injuries during I’ve found that even in races I don’t training, setting me back and slowing cough that much. my progress - this was disheartening and made it hard to stay motivated. A cough or two every half hour or so is pretty standard, but the effects over the Coming home after work, getting the next few days are dramatic; a brisk run kids into bed, seeing my wife and then loosens everything up so much that if there’s any sputum in my lungs, I’ll clear going out for long training runs in the cold, the dark, the rain and wind was most of it in the next few days. I find it always a mental battle, but I always felt by far to be my most effective airway
inspired and empowered when I trained at these times. I came away from this training with a strong feeling of self discipline. I also felt good knowing I was making positive changes for my health. Despite training setbacks and injuries, I competed in the Ross Marathon in September last year. The Marathon course is a fairly flat track around the town of Ross, about 10km long which is run four times. My parents, wife and sons waved to me each time I ran through the town centre, which was a great encouragement. The race was really challenging - I started off too fast, finding the first lap quite easy going, however by the third lap around the course I realised I was running further than ever before and didn’t know what lay ahead. I was ready to finish by the end of the third lap but had to push on for the fourth, while watching some of the faster runners already closing in on the finish line. The final lap was exhausting - crossing the line I felt sore, weak and shaky - but it was also exhilarating. I had finally achieved what I set out to do! After taking a short break from running to recover, I’m now back to enjoying short runs every couple of days. While a marathon, a half marathon or even a 5km race may not be for everyone, running is a pastime I have come to love and one I would recommend to anyone looking to improve their health and enjoy some time outside. Article written by James Kleining
CFT NEWS 13
STARLIGHT FOUNDATION WISH GRANTED The Starlight Foundation in Australia makes dreams come true for young people living with a serious illness. Recently CFT let our members know that the Starlight Foundation had met with Cystic Fibrosis Australia and were keen to receive nominations for members aged between 4 and 21 years of age. We are delighted to share the story of CFT member and hairdresser, Meg Willes who received her belated wish from the Starlight Foundation last year. Below, Meg tells of her adventure thanks to the Foundation. When I was a paediatric patient I was never offered the opportunity to make a wish through the starlight foundation, but last year I was lucky enough to be able to have my wish granted.
Meg (L) and her best friend flying high over Hamilton Island
CFT’S FINANCIAL YEAR
On October 1st 2016 my best friend and I headed off to Hamilton Island for five nights, where we had the opportunity to snorkel on the Great Barrier Reef and take a helicopter ride to White Haven Beach. We enjoyed wonderful weather, lots of swimming and sun, delicious meals and a variety of yummy cocktails.
CFT has just completed the transition to a new financial year. Previously the Association operated on a traditional financial year of 1 July to 30 June. Following the adoption at 2015’s AGM of a new Constitution, CFT now operates on a calendar financial year. This puts us in line with most other CF Associations around the country.
Living with CF, an often invisible illness, I do feel like I miss out on things. I know my life is different to my friends and peers, and although Scuba Diving on the Great Barrier Reef I’m a big believer in focusing on the positive things in life myself. Although my CF didn’t take sometimes it sucks a bit. a vacation and I still had to keep on top of my treatments and keep I dedicate a lot of time to my health active. One day we did an hour walk and put a lot of effort into staying on up to the top of the island - which top of all of my treatments, as well was well worth it for the view - and as attending the gym multiple times of course the physio! a week - something I know my friends and family don’t need to do Currently the average life expectancy to stay healthy. Although, I wouldn’t for someone born with CF in Australia have it any other way. Being alive, is around 38 years. I’m hoping to top and able to enjoy life and all the that, but it doesn’t come without wonderful things it has to offer is its fair share of challenges, and the worth the work. lurking knowledge that most of those are yet to come. Sometimes that all gets a little bit much and I feel so blessed to have Life doesn’t have to be perfect to been able to experience such a be wonderful, and this was such a beautiful place, with everything truly wonderful experience that I am taken care of and all our expenses incredibly thankful to the Starlight paid for so that I could just enjoy Foundation for this opportunity.
What does this mean to you as a CF member? It simply means that many of the services we provide to you such as Little Day Out and Gym Membership Assistance, will be offered between 1 January and 31st December each year, rather than until 30 June. So if you haven’t lodged applications this financial year for some of our programs you have until 31 December 2017.
14 CFT NEWS
ENTERTAINMENT MEMBERSHIPS 2017-18 It’s not too late to get your hands on the 2017-18 Entertainment Book or Digital Memberships. We have both Hobart and Launceston books available. Books don’t expire until 30 June 2018 so you have plenty of time to use the many discount vouchers.
CFA CEO Nettie Burke opening the Conference
2017 CFT MINI CONFERENCE Participants gathered at Hadley’s Orient Hotel in Hobart for this year’s Mini Conference, “New Horizons” on Saturday 18th March 2017. The event was opened by Nettie Burke, CEO of CF Australia, who emphasized the importance of members becoming well informed advocates for CF. With a packed program covering many aspects to CF from diagnosis and the early years through to pregnancy in CF there were topics of interest for many different stages of life with CF. We were honoured to have Dr Shivanthan Shanthikumar, Respiratory Fellow at the Royal Childrens’ Hospital in Melbourne as our keynote speaker. Dr Shanthikumar’s presentation on “Treatments that Improve CTFR Function” was informative, yet presented in language that was easily accessible to those without medical backgrounds. Other presentations included: •
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Dr Sue Keating, Obstetrician and Gynecologist – “Family Planning and Pregnancy in CF”; A/Professor Sean Beggs, RHH – “Diagnosis and the Early Years”; Sam Beattie, Clinical Nurse Consultant (LGH) & Sunita
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Date, Senior Diabetes Dietitian (LGH) – “CF Related Diabetes”; Jenny Hauser, Senior Physiotherapist (TACFU) – “The 10 Commandments of Physiotherapy”; Rowan Bridley, Clinical Nurse Specialist (RHH) – “PICCS, Ports & Needles”; Kirrilee Waterhouse, Dietitian (RHH) – “CF Cooking”. Nathalia Krelling, Dietitian (RHH) “CF Bone Disease”
Some speakers have made their presentations available for those members who weren’t able to be there on the day. These have now been placed on the CFT website under “What we Offer”, “Educational Programs” so be sure to take a look. Hearing the personal perspectives from members is always a highlight of these events and this year two shared their stories. Luke Newson of Launceston shared his journey with CF Related Diabetes (CFRD) in an engaging presentation which helped participants to understand what life is like with CFRD. CFT Committee Member, Sam Fox, gave an emotional account of her family’s experiences following daughter Scarlett’s birth three years
James Maclachlan & Jenny Hauser from TACFU.
(L-R) Nettie Burke, A/Prof Sean Beggs, Sam Fox & Dr Sue Keating
ago and subsequent diagnosis. We greatly appreciate both Luke and Sam being courageous enough to provide us with honest accounts of their CF journeys. Bringing together an event such as this is never easy and there was a small, but determined committee that made this a reality. Thanks to James Maclachlan, TACFU Co-Ordinator, and CFT Executive Officer, Paula Wriedt, for making their work on making this a successful event. We owe a debt of gratitude to Jenny Hauser, TACFU’s Senior Physiotherapist, who worked incredibly hard in putting together an excellent program. Jenny devoted a lot of her personal time to this event and we greatly appreciate her passion in ensuring members benefited from such a worthwhile educational event.
CFT NEWS 15
NATIONAL ACCOLADE FOR DENNY FLEMING Long time CFT volunteer and former Committee member, Denny Fleming, was amongst eight people honoured at the inaugural Cystic Fibrosis Australia Patron’s Awards late last year. Presented by CFA’s Patron, His Excellency, the Governor General, Sir Peter Cosgrove, these awards were created to give recognition to the many outstanding contributors to the CF communities Australia-wide. Denny was presented with the inaugural Community Fundraiser Award in a lovely ceremony at Admiralty House in Sydney. Denny was nominated by CFT for her passion, creativity and success in all that she’s done for CFT.
As soon as she learned about CF through a new work colleague who had a young daughter with CF, Denny set about fundraising. Her first venture was a highly creative indoor golf competition that raised $1200 and this was soon followed by clever initiatives in the workplace (such as selling ice creams and chocolates to a captive market), bake-offs, crazy hair days and more. Denny has also undertaken several highly successful 65 Roses Challenges – including teams “Running for CFT” and “Sliding for CFT”, the latter being the highest fundraising team Australiawide last year. What’s special about Denny is her ability to quietly persuade colleagues and friends to get involved. One year she enlisted 14 workmates to join her in tin rattling on 65 Roses Day in Hobart’s CBD. This was a significant boost to our volunteers and led to a record year of collections.
Denny’s has been extensively involved in many other CFT events. She’s been one of the real “worker-bees” for the last two Gala Balls in Hobart, initiated and has run the last three CFT quiz nights and she held the position of Secretary of CFT during her time on the Board between 2013 and 2015. What’s even more amazing is that Denny also has three sons, all of whom have numerous sporting and school commitments and somehow she finds time to be involved in volunteering with many of these also. We can’t speak highly enough of Denny the contributions she has made to CFT over many years. She is quietly spoken and most humble about her achievements. In fact we know she will be somewhat embarrassed by this article highlighting her many contributions. But it’s important that as members you know that we have supporters such as Denny who work so hard for your Association.
Pritchard, a hemiplegic (paralysed on the right side of his body), will ride a tandem recumbent trike with Duncan Meerding who is legally blind so he can be Duncan’s eyes.
LOWEST TO HIGHEST — AN EPIC JOURNEY As most members of the CF community know, there is no stopping our very own Walter Van Praag. Never sitting still for too long, he’s about to set out on yet another incredible challenge – this time with a group of friends. 16 CFT NEWS
What’s unusual about this journey, from the lowest point in Australia (Lake Eyre) to the Highest Point (Mt Kosciuszko) is that it will be undertaken by a group of five friends who all live with challenging disabilities. Walter with his decreased lung function from CF will be joined by Conrad Wansbrough who has a spinal cord injury preventing him from bending, and paraplegic Daniel Kotja who uses a hand cycle. Paul
Their 2100km journey will kick off on 1st September 2017 with the aim of reaching the summit of Mt Kosciuszko in late October. A documentary about their adventure will be released later in the year, thanks to a successful crowd funding campaign. In the words of these adventurers “What could possibly go wrong?” Our best wishes to Walter, Daniel, Conrad, Paul and Duncan for a successful and incident free trip. Follow their progress at www. lowest2highest.com.au.