cfconnections Cystic Fibrosis New South Wales December 2010 Pedal for Life in 2011 New ambassador for CF NSW Physio when it’s not physio CF Stories Personal Reflections Cystic Fibrosis New South Wales t 02 9878 2075 e firstname.lastname@example.org PO Box 149, North Ryde NSW 1670 f 02 9878 4890 www.cysticfibrosis.org.au/nsw Registered by Australian Print Post No. PP241576100045 cfconnections December 2010 Contents Message from Helen Griffiths, Message from Helen Griffiths CEO, Cystic Fibrosis NSW SUPPORT SERVICES AND MEMBERS INFORMATION 1‑2 This will be my last message to you as CEO as I have decided to retire at the end of this year. The Board is currently Message from Bryson Vaughan 1 engaged in recruiting a replacement and we will let you know New Ambassador for CFNSW 2 as soon as the decision has been made. nib funding for Regional Support 2 I started working with Cystic Fibrosis NSW in May 1980 as a part time social worker. At this time, the organisation had HEALTH & RESEARCH 3‑6 one full time employee and four part time staff. This later became a full time position and then in February 1987 the Physio when it’s not physio 3 Board asked me to become the CEO as well as remaining Pharmaxis announces Trial Results 5 as the social worker. We were finally able to appoint another social worker mid 1988. NEW Creon Micro 6 During my years with the organisation there have been enormous improvements in CF STORIES 6‑8 the lives of people with Cystic Fibrosis thanks to the discovery of the CF gene, a greater understanding of the condition and the development of new and improved treatments. In Letter from Wendy Peters 6 1989 the first person with CF had a heart/lung transplant and since then 142 people with CF By Kristen Braun 7 have had double lung transplants. Thanks to a dear friend 8 In 1980 there were very few adults with CF and now 45% of people living with CF in NSW are adults. REGULARS 9‑14 I have greatly enjoyed my years of working with the CF community and the CF Clinics. I greatly Fundraising news & events 9 admire the courage and fortitude of those living with CF, their positive attitude and their great Pedal for Life 9 zest for life. I have also admired the courage and tenacity of all the parents, carers and partners of people with CF and their determination to see they have the best chance of life. I appreciate Blackmores Sydney Running Festival 10 all the support and appreciation we have had from our members over the years. 65K for 65 Roses Walk 11 My thanks to all the donors, supporters, community fundraisers and organisations I have Great Strides Walkathon 12 worked with over the years who have helped to make CFNSW the success it is. Annual Raffle 13 In this edition you will read about the success of our events, Crazy Hair Day and Great In Memory 13 Strides, which have achieved the best results ever. Community fundraisers have also worked hard over the last few months and we greatly appreciate their efforts. As I write we have just Deadline for next issue concluded our Annual Raffle and are in the middle of our Christmas card selling. We really appreciate your help and Finally I acknowledge the dedication and hard work of all our staff over the years which support with our newsletter and enabled us to achieve our aims. Also thanks to the Board members who have volunteered would like to make it as interesting and their time to the CF community. informative as possible for our members. Please send us your questions, hints, The staff and I wish you all the best for Christmas and the New Year. tips, stories from your travels or anything that you may have seen that you think would be of interest to our readers. The deadline for our next issue of CF 9th Australasian Cystic 20 th - 23 rd August 2 011 Connections is February 4 2011. Fibrosis Conference Disclaimer: This newsletter is edited The Conference will be held in Melbourne at the Melbourne Convention and Exhibition Centre. and produced by ADW Communications for Cystic Fibrosis NSW. Articles or The lay program for parents and friends will be held on Saturday and Sunday, August 20 advertisements in this publication do not and 21. The program will include speakers from overseas and from around Australia. necessarily reflect the views of the editor or those of CFNSW. The preliminary program will be published in February 2011. Cover: Ebor Public School Crazy If you would like information please check on the website: www.cysticfibrosis.org.au Hair Day 2010 CFNSW will provide subsidies for parents wanting to attend. More details in the March 2011 Connections. Designed by RDA Creative SUPPORT SERVICES AND MEMBERS INFORMATION cfconnections December 2010 | 1 Message from Bryson Vaughan President Cystic Fibrosis NSW After 30 years with CFNSW, Helen Griffiths, our CEO, has announced her very well earned retirement. During Helen’s leadership, CFNSW grew from a small family extremely hands‑on and is always there in the front lines supporting support service to the current diverse staff and now provides a her staff, whether it be social work, fundraising, lobbying or range of services greatly needed by those in NSW. The organisation bookkeeping and administration. has an annual operating budget of over $1 million largely funded by their and our community’s efforts. Helen received an Order of In whatever role she has taken, Helen has always acted with Australia Medal for services to CF in 1996. integrity, a passion for the cause and dedication. In whatever path her retirement takes, Helen will always remain a valued friend of the Helen was originally employed as our social worker and was the organisation and myself personally. first supporting voice many of us heard in our childhood or youth and for our parents in those difficult early days. There often wasn’t As a final word, I promise you Helen that we will continue to build a lot of help then and in many cases, all that could be offered was on those principles and that we will continue to serve the needs her support. Helen became very close to many of us and we often of those with CF that you have helped guide for so long. I hope take the time to remember with great fondness all of those amazing that everyone with or affected by CF in this country appreciate and people who have been such a huge influence and part of our lives. recognise the dramatic improvements in our lives that have been a direct result of your actions. In February 1987 during a very difficult period for CFNSW, Helen agreed to take on the CEO role and with few resources, managed Helen, we thank you. to develop and take the organisation to its current strong position. Bryson Vaughan As well as running the organisation, Helen has always been Support Services and Office Closure Members Information over Christmas To contact our Social Work department please call or email: The CFNSW offices in Sydney and Newcastle will be closed Karene ‑ Families from noon on Friday, December 24 Ph. 02 9878 2075 email@example.com and will reopen on Tuesday January 4, 2011. Miraa ‑ Adults If there is a matter requiring urgent attention please leave a Ph. 02 9878 2075 firstname.lastname@example.org message on our answering service on (02) 9878 2075 and Barbara ‑ Newcastle & Hunter we will get back to you. Ph. 02 4960 2922 email@example.com DIARY DATES 2011 STAFF CHANGES Swimathon for CF ‑ Saturday February 5 New Office 65K 4 65 R oses Walk ‑ S aturday March Manager Byron Bay Blue s Festival ‑ Apr il 21 to April 2 5 65 Roses Day 5 We welcome Diane More who is our ‑ Friday May 27 locum Office Manager while Emma Newcastle CF Fenton takes maternity leave. Emma Ball ‑ June Chloe 65 Roses Ball ‑ Saturday Jun will return in October 2011. e 4 Crazy Hair Day We are delighted to announce that Emma’s daughter, ‑ Friday July 1 Chloe Sorcha Fenton was born on Thursday October 21 at 3.24am at CAAMM Cup Golf Day ‑ Fri Sydney Adventist Hospital, Wahroonga, NSW. day July 22 Great Strides Walk ‑ Octob er Congratulations to Emma and Dave. 2 | cfconnections December 2010 New Ambassador for CFNSW We are delighted to announce that Laura Baldwin is CFNSW’ newest Ambassador. Laura is a former Olympic sailor and current Australian champion, coach and public speaker. She has an impressive CV which includes some of the following highlights: Australian Laser Radial Women's Champion 2010 ISAF Women’s Match Race World Championship Bronze Medallist 2010 ISAF World Ranked No 2 Laser Radial 2006 British Olympian, Europe Class, Athens 2004 ISAF Athletes Commission Rep 2007‑2013 Australian Laser Class Association Secretary 2010/11 Laura was an active supporter and ambassador for charities in the UK and, now resident in NSW, is looking forward to raising awareness and funds and forging links with CFNSW and the sailing community. We look forward to Laura’s involvement and will keep our website updated with further news. Country Outreach Service Our Country Outreach Clinics are continuing with the support of State Street Foundation. On Friday, September 17 the clinic team from Sydney Children’s Hospital visited Wagga Wagga and saw patients and their families there. On October 14 and 15 the team from John Hunter Paediatric CF Clinic visited Tamworth. The visit included a meeting with the paediatric team from Tamworth Hospital. nib funding for Regional Support Scheme For some time, CFNSW has been concerned that staff can’t Overall, we hope to offer assistance to: routinely visit families living at a distance from Newcastle. the child/adolescent with CF With this in mind, we applied for a funding grant from the nib the parents of a child with CF foundation and are very happy to report that we were successful in sibling concerns? We have some specific strategies our bid. The funding grant is for one year. The ongoing nature of this grandparents would be invited to ask those “How can I help” scheme will depend on its level of success. We will use the funding questions regarding CF to provide visits twice a year to the 19 families living more than two aunts/uncles/cousins frequently have questions about their own hours away from Newcastle. Keryn Schwager and Barbara Anderson genetic inheritance will be the first funded visitors. it is often very helpful when supportive “best friends” learn more about CF, particularly in the teenage years when friends We have canvassed families to hear what would make a difference are so important for them. During visits, we can talk about day‑to‑day aspects of coffee/lunch/a meeting can be arranged between CF families CF. Airway clearance techniques (physio) can be discussed. We living close to each other can arrange get‑togethers of parents of children with CF who live we can also talk to the staff working in local schools, Community geographically close. With sufficient notice, we can arrange some Health Centres and other health professionals etc. community involvement. Perhaps it’s time for a school visit. we can try and improve the services you receive from local organisations. By the time we get there, we hope to have a really clear idea of what the families would like from the service and how best we can help. CFNSW is very happy to be able to offer this service and are very appreciative of the nib funding which will allow this to happen. HEALTH AND RESEARCH cfconnections December 2010 | 3 Tuncurry visit Recently, Barbara Anderson, Keryn Schwager, CFNSW, and Michelle Bull, Home Care Coordinator, worked together to organise a trip to the Tuncurry area to provide some airway clearance training and assistance for a family with three children with CF. This is the first time this service has been organised, and, as our photograph shows, it was a triumph for teamwork. Some firsts are big things Globally, all people aware Some firsts are smaller And happen when good people care This first is a little one, but big enough to make us smile When Keryn and Barbara and Home Care staff Drove up the coast to go that extra mile To teach and to train, to talk and to laugh The three Kunzli kids, their parent Keryn and the Hom s, To learn what to do, where to go, what to say e Care workers For these bright, bouncing little ones Eyes shining, hair flying, a really great day The team keeps us running and just having fun. Physio when it’s not physio: how to enjoy physio options Senior CF Physiotherapists from Royal Prince Alfred, Westmead and Sydney Children’s Hospitals A Summary from the CF mini convention July 2010 Why chest physiotherapy for CF? The newly diagnosed infant Daily routine at diagnosis ‑ 12‑20 minutes of manual defective chloride channel and excessive sodium resorption physiotherapy in modified postural drainage positions abnormal mucus (volume/viscosity) Once daily when well, increased when unwell impaired cilial action and early peripheral sputum plugging Gravity assisted positions may be introduced from Physiotherapy aims to reverse genetically mediated abnormal lung one year onward. clearance and thus prevent the destructive cascade: infection/inflammation Speeding up expiratory airflow permanent dilatation of bronchi A slow deep breath in and active exhalation increased airway collapsibility Cough, laugh, sing, musical instrument impaired ventilation & gas exchange Huff, Autogenic drainage Flutter, Bubble PEP Strategies Manual techniques Percussion, vibration, Assisted Autogenic drainage 1. Speed up the movement of the mucus layer Exercise ‑ with oscillation (running, bouncing) Drainage and manual physio works, but it looks a little different in 2010 2. Prevent airway collapse or blockage Usually not head down due to the risk of reflux Less passive, with increased use of mouthpiece PEP, breathing PEP can take many forms, evolves through the lifespan strategies and inhalation Autogenic drainage May use mask ventilation in the very fatigued Continued page 4 4 | cfconnections December 2010 3. Make the mucus less thick Holistic physiotherapy management Oscillation Efficient sputum clearance Antibiotics Reduce the concentration of bacteria and the impact of infection and inflammation that makes CF mucus thicker Maximise and maintain aerobic fitness, functional DNase (Pulmozyme) strength, muscle bulk Exercise increases sputum clearance via expiratory flow Breaks down DNA residue to improve sputum rheology ventilation, airway oscillation. Effects viscosity ‑ 15 minutes up to 12 hrs Use ‘normal’ training stimulus Improves lung function Intensity: 50‑85% of VO2 max, HR max Cochrane re timing (Dentice 2010) ‑ Dyspnoea score 3 (moderate) For children with well preserved lung function, DNase before physio is more beneficial for small airway function ‑ May use intervals, oxygen Duration: 20‑30 mins ‑ may use interval training Hypertonic saline Frequency: 3‑5 days/wk Reduces viscosity of sputum Resistance: 1 set of 8‑10 reps building up to 3 sets 2 days/week Restores airway surface liquid Independent predictor life expectancy and QOL Stimulates cough Important role: prevent osteoporosis, prevent deconditioning Disrupts biofilms during a hospital stay, psychological and immune benefits Improves lung function Reduces number and duration of exacerbations Promote and maintain good bone health No long‑term adverse effects on microbiology The association between hours of weight‑bearing exercise and Improves school and work attendance and quality of life BMD is similar to that of the normal population. Improves efficacy of airway clearance and ease of expectoration Exercise pre adolescence produces higher gains in BMD than adulthood Mannitol high‑impact, generating ground reaction forces greater than Increases mucocillary clearance to a similar magnitude as twice body weight, skipping is an excellent strategy hypertonic saline Promote and maintain good posture Personalised prescription Slumped postures are common and may predate structural change. Age, maturation, independence Strengthening of thoracic extensor muscles and scapular Disease severity stabilizers will improve endurance and limit persistent Sputum: quantity, viscosity, location (peripheral/central) thoracic flexion. Airway: collapsibility, hyperreactivity Normal training stimuli Cough: strength, control, breathlessness Stretch maintained >15 seconds at end of range, 2‑4 times daily Life goals (parenthood, travel, career) Complexities (pregnancy, haemoptysis, osteoporosis, NIV) Prevention and treatment of musculoskeletal pain Transplant (workup, waiting, post) Treatment (variety, complexity, adherence, cost) Prevent and treat stress incontinence Provide emotional support and education Physiotherapy treatment is dynamic and requires regular contact with your physiotherapist to maintain an individualised program that: Suits your age, lung function and life goals Is up to date with current research and clinical practice Maintains lung function to prevent deterioration (increasingly important in the ‘normal’ category). aerobic fitness M aximise and maintain cfconnections December 2010 | 5 Pharmaxis announces positive combined Phase 3 Cystic Fibrosis Trial Results Baltimore, Oct 22/PRNewswire. These conclusions were echoed by participants in CF302: Pharmaceutical company Pharmaxis today announced significant In treating CF, I take a lot of medications. Some are pills, like different results of pooled data from its two large scale six month Phase III antibiotics, and some are nebulizers or inhalers such as Albuterol, trials of Bronchitol (inhaled mannitol) in people with CF. Pulmozyme. One in particular ‑ tobramycin ‑ I took when I was sick, but after taking Bronchitol I was able to stop that because it made The combined results have been presented for the first time at such a huge difference in my pulmonary function test. K. Age 18. the North American Cystic Fibrosis Conference (NACFC) currently underway in Baltimore. In addition, more results from the second Bronchitol was a portable medication, and that was certainly trial (CF302) have been released to supplement the top line results important, because I could go on a trip, and I didn’t have to drag reported on 22nd June 2010. along something like the nebulizer. L. Age 18. The two studies were of similar design and encompass 643 patients Bronchitol is designed to hydrate the airways surface of the lungs, from 11 countries. Over the 26 weeks of the two studies, patients which can then be cleared more effectively by ciliary clearance treated with Bronchitol had an average 7.3% improvement in lung and coughing. It has received Orphan Drug Designation and fast function (FEV1) compared to baseline (p<0.001) and a highly track status from the U.S. Food and Drug Administration and significant improvement compared to patients in the control group Orphan Drug Designation from the European Medicines Agency. A (p<0.001). In the sub group of patients who were also on rhDNase, marketing application has been submitted and is under review by patients taking Bronchitol showed a 5.3% improvement from the EMA. baseline (p<0.001), that was again superior to the control group (p=0.020). In the sub group of patients who were not on rhDNase, About Pharmaxis patients taking Bronchitol showed a 9.44% improvement from Pharmaxis (ACN 082 811 630) is a specialist pharmaceutical baseline (p<0.001), that was also superior to the control group company involved in the research, development and (p=0.009). The overall rate per annum reduction in exacerbations commercialisation of therapeutic products for chronic respiratory for patients on Bronchitol versus those on control was 25% (NS) disorders. Its development pipeline of products includes Aridol and the number of patients experiencing an exacerbation was 29% for the assessment of asthma, Bronchitol of cystic fibrosis, lower for those taking Bronchitol (NS). This result was achieved in bronchiectasis and chronic obstructive pulmonary disease (COPD), a well‑treated patient population who overall had a very low rate of PXS25 for the treatment of lung fibrosis and ASM8 and PXS4159 for exacerbations in the study. asthma. Pharmaxis is listed on the Australian Securities Exchange “This comprehensive analysis of the pooled results provides an (symbol PXS). The company is headquartered in Sydney at its important insight into the overall benefits Bronchitol can provide TGA‑approved manufacturing facilities. For more information about to patients who are receiving current best standard of care,” said Pharmaxis, go to www.pharmaxis.com.au or contact Investor Pharmaxis Chief Executive Officer Dr. Alan Robertson. “The number Relations on phone +61 2 9454 7200. of exacerbations in the two studies was fairly low, reflecting the aggressive treatment with antibiotics that is now common practice About Bronchitol in the clinic. Despite this, Bronchitol produced a clinically relevant Phamaxis Ltd is developing Bronchitol for the management of reduction in exacerbations in patients completing the study, and chronic obstructive lung diseases including cystic fibrosis, and together with recent date showed sustained benefit in lung function bronchiectasis. Broncihtol is a proprietary dry‑powder mannitol, out beyond 18 months.” precision formulated for delivery to the lungs through an easy‑to‑use, pocketsize, portable inhaler. Once inhaled its five‑way Other results from CF302 presented at the NCF conference action on mucus helps restore normal lung clearance mechanisms. underlined both the good safety profile of Bronchitol and patient Bronchitol has received Orphan Drug Designation and fast track adherence. Overall adverse events on Bronchitol were similar to status from the US Food and Drug Administration and Orphan those experienced on control with 7% of patients taking Bronchitol Drug Designation from the European Medicines Agency. withdrawing due to adverse events compared to 4% of patients on control. There was no increase in the numbers of bacteria present About the North American Cystic Fibrosis in the lungs. The most commonly reported adverse event related to Conference (NACFC) treatment was cough occurring in 6% of the Bronchitol group and 3.3% of the control group. The NACFC is a scientific conference designed exclusively for medical professionals in the field of CF study and care and is Moira Aitken, M.D., F.R.C.P. (Edin), Professor of Medicine, Division attended by over 3,000 physicians, research scientists, nurses, social of Pulmonary and CCM, University of Washington, and lead workers, nutritionists, dieticians, physical therapists, respiratory principal investigator of CF302, stated, “We are excited by the results therapists, pharmacists, psychologists, psychiatrists and research of the Bronchitol Phase III clinical programme. Across both trials, coordinators. The conference offers more than 70 educational and inhaled mannitol was well tolerated and demonstrated an early and scientific sessions on the latest CF research and therapies, as well as sustained improvement in lung function. This improvement in FEV1 a showcase of CF‑related products and services. Educational topics was achieved on top of aggressive use of concomitant medications include the importance of newborn screening, advancements in such as inhaled antibiotics and rhDNase. These results, coupled drug discovery and development, the importance of clinical trials, with Bronchitol’s novel formulation and portable dry powder inhaler quality improvement and patient outcomes, comprehensive lung administration, suggest that it will have a significant impact on CF care, and improving nutrition care. patient well‑being.” 6 | cfconnections December 2010 CF STORIES NEW Creon Micro (pancreatic extract) NEW Creon® Micro (5,000 granules) will be available in Australia and PBS listed from December 1 2010. Creon® 5,000 capsules will be discontinued when the current available stocks have been depleted. Creon® Micro is formulated as loose, pH sensitive, enteric‑coated Care should be taken to ensure that Creon® Micro is not granules. The granules are administered by sprinkling onto soft food retained in the mouth to prevent irritation of the oral mucosa. which does not require chewing (eg apple puree). Creon® Micro has been developed specifically to allow accurate and convenient dosing The measuring scoop supplied measures 100 mg of Creon® Micro in infants and young children with pancreatic exocrine insufficiency. which contains pancreatic extract 60,12 mg equivalent to not less than 5,000 BP units lipase, 3,600 BP units amylase and 200 Ph. Creon® Micro can be added to: Eur. units protease. 1 scoop = 5000 BPU lipase. Small amounts of acidic soft food (pH<5.5) that do not require The soon to be discontinued Creon 5,000 capsules contains not chewing such as apple puree. less than 5,000 BP units lipase, 4,000 BP units amylase and 300 Ph. Eur. units protease. Liquids of pH<5.5 (undiluted apple/orange juice). Creon is the only pancreatic enzyme replacement therapy that Creon® Micro should not be mixed with milk or infant formula offers a high degree of flexibility with its complete dosage range: prior to administration. Creon® Micro (5,000 granules), 10,000 25,000 and 40,000 BPU Creon® Micro should be swallowed with meals without crushing lipase strength capsules. or chewing, and followed with water or juice to allow the enzymes to mix thoroughly with food, ensuring complete ingestion. Letter from Wendy Peters, Singleton NSW To all mums and dads who have a child, or children with CF. I have a beautiful daughter, Penne, 31, she married two years ago. Her husband is one in a million ‑ believe me, this does happen. They live a very active and full life. Exercise is the key and attitude also has a big part to play plus a good diet. Yes, she has bad times‑but she bounces back. This year I decided it was time to do something special. My golfing friends agreed that a “Chill Out” luncheon for CF at my home was the way to go. Twenty six ladies supported the cause and we managed to raise $900. We had a fun filled day and I’m so proud to think that so few people could be so kind and giving. Exercise and positive attitude is the way to go. Together we can do it. cfconnections December 2010 | 7 By Kristen Braun With acknowledgement to CFV for this article. Building resilience in partners Boosting Resilience As we all know, being in a long‑term relationship brings both Firstly, it’s important to recognise that resilience is not about being rewards and challenges, but add an illness like CF and it can happy all the time. This is impossible and certainly very unrealistic seem like an impossible task to keep the balance right. The in the context of living with CF. In fact, being realistic about our unpredictability of chronic illness can mean that couples feel like emotions and understanding that they all have an important role they’re riding a roller‑coaster of emotions and it can seem like a to play is one of the essential ingredients to resilience. Rather than relentless task staying on top of everything. This seemingly constant trying not to experience the negative emotions it’s actually about job of “keeping on keeping on” is what we refer to as resilience. having the tools to manage even when we’re feeling unhappy, Basically resilience is all about bouncing back from life’s hardships frustrated, angry, anxious or depressed. The reason it’s important and knocks. It’s the built‑ in emotional buffer that gives people the to have these tools is so that we don’t completely crumble every ability to cope with the things that life throws at them. Some people time we are feeling down. This in turn instils in us the confidence do this with relative ease and seem to have been born with the that we can tackle life’s hardships, which is the basis of resilience. innate ability to maintain a “cup half full” mentality. For most of us In essence building or maintaining resilience is about keeping though, resilience is something that needs to be continually worked on and developed throughout our lives. The good news is that it’s something we can all learn and therefore “skill up” on. "I’ve dealt with CF for over 30 years and while I reckon I’m pretty good at it, things can still Resilience in the context of CF knock me over from time to time such as being Living with CF either as the person with it or as the partner already means that your ability to cope and your level of resilience will have diagnosed with diabetes four years ago. But I been put to the test many times. Even if you’re fortunate enough always allow myself the time and space to process to be in a situation where you or your partner is well a lot of the time, there are always daily routines and medical regimes that the new health challenges and keep looking serve as a constant reminder that CF is here to stay. For other’s forward even if that’s just to our next weekend who face regular trips in for tune‑ups and endless check‑ups it can sometimes feel like damn hard work to keep looking forward and away or time with friends." keep coping. This is also really relevant for partners who often feel a mixture mentally and emotionally fit. Just as we know we need to do the of emotions every time they see their loved one unwell. It’s not physical slog to keep our bodies fit, we also need to do a few things uncommon for partners to feel helpless that they can’t make their to keep our minds fit and healthy. partner get better, as well as a mixture of fear, sadness, worry, guilt and hope. Many partners can also feel it quite a burden to be the Some ways partners can boost their resilience: positive one and boost their CF partner up. And what a wonderful job so many of them do, my husband included, yet this begs the Keeping active is such a common notion but it can really help question about how they themselves manage to keep themselves clear the head (and keep you fit). going all the time. Making time for yourself can be tough when CF demands One of the things my husband said to me one day was that he chose so much time and attention from both of you but this is essential his life with me and took on CF whereas I chose the relationship but in any relationship. Scheduling in regular time away from each I didn’t get a choice about CF. So in many ways this might mean other to do something you find relaxing or fulfilling is a great way that a very special breed of person becomes the partner of those to build your emotional buffer. with chronic illnesses but it doesn’t necessarily mean they came armed with a coping kit. Furthermore our ability to cope with things Allow yourself not to be the “brave one” from time to can really fluctuate depending on our circumstances. So it might time. We all have our good days and bad ‑ it’s totally normal. be that when the relationship began the person with CF was pretty It’s ok to talk to your partner about your fears and worries. By well and at some point into the relationship their health status may sharing the emotional burden of CF you deal with it together and have changed, which no doubt challenged their own ability to cope chances are your partner wants to hear how it’s affecting you. but would have equally challenged their partner. So if you’re reading this thinking that you are someone who finds your ability to deal with Laugh a lot. Humour is the best medicine. Being able to laugh CF goes through peaks and troughs you’re not alone, many of us in the face of adversity is a must in the context of CF. There are experience this. So how do we maximise our ability to cope and build so many serious things that it’s way too draining to be serious all this thing we call resilience particularly in the case of partners? the time. Continued page 8 8 | cfconnections December 2010 Lean on others. Our friends and families are there to help Simplify things for a while. If you have too many support us. Talking to them about some of life’s ups and downs commitments and things on your plate try to keep things simple is essential too ‑ you don’t need to keep putting on a brave particularly when life is feeling more stressful. Scheduling “nothing” face in front of them either. Don’t be afraid to get in touch with time on weekends and making time for a daily lunch break are professional support such as counselling either. We all need an some of the little things that can be sanity keepers for all of us. impartial ear from time to time and it can be a great space to process some tough feelings in a confidential space. Resilience in my life All of the things listed above are things that my husband and I try to Tackle things one day at a time. Don’t try to cope with do as often as possible so that we both feel we’re keeping ourselves big issues all at once. Take time to break it into little chunks and our relationship on track. For many of you, like us, life feels and tackle a little bit each day. The same applies to changing a pretty normal most of the time and we deal with my periods of ill habit or doing something differently in the relationship. Doing health and tune‑ups as best we can. But there are definitely periods something a little bit each day will lead to a big change overall. of time that can feel tougher than others and that’s when I think it’s really important to keep coming back to the basics like the things Keep perspective. Remind yourself that change is constant listed above. I’ve dealt with CF for over 30 years and while I reckon so you probably won’t feel this way forever. Chances are you’ll I’m pretty good at it, things can still knock me over from time to feel differently tomorrow. How we feel about a situation is largely time such as being diagnosed with diabetes four years ago. But I determined by how we choose to perceive and respond to it. always allow myself the time and space to process the new health So try to choose a calmer, more optimistic or more realistic challenges and keep looking forward even if that’s just to our next approach. weekend away or time with friends. I couldn’t have done it without the amazing support of my husband Andy (even though I refer Schedule in a few ‘feel good’ activities. Plan ahead to him a lot as my husband I’m still adjusting to the term as we and book in activities as a couple or with friends that give you only recently got married). So for all of the partners out there give something to look forward to. This can be particularly helpful yourselves a pat on the back for a job well done because living with straight after an admission or period of ill health. A weekend CF can be a bloody tough gig but sometimes it’s good to just forget away, a movie, a picnic, a meal out and keep talk about CF about that for a while and get on with living life. off the agenda. Thanks to a dear friend from Heidi White I have a seven year old son who has CF and is also autistic and I have a lovely fundraising story to share with you. I have a friend, Joanne Pirrone, who sold merchandise for me work. She was a woman on a mission ‑ she even asked me if it was for 65 Roses Day. Jo, being Jo, was not content with only selling OK to sell for longer than the actual date for 65 Roses Day so she merchandise, she wanted to do something more. She asked me if could sell more tickets. she could run a raffle in accordance with 65 Roses Day as well. As I am a Nutrimetics consultant, she suggested that I put together Jo managed to raise $400.00. She was a little disappointed, as a basket of Nutrimetics products as the prize. So I did and I took she would have liked to reach $500.00, but had exhausted all a photo and made a list of all the products, showing the RRP. The her avenues. I was elated at $100.00 let alone $400.00. She raffle tickets were $1.00 each or 3 for $2.00. has already said to me for next year that she would like to have a sausage sizzle at work for 65 Roses Day on top of selling CF merchandise. Jo is married, works full time and is a Mum to two "It is people like Jo who give me hope for beautiful boys, aged six and three but she found time to do all the a cure for CF. With Jo’s drive, passion and work required for fundraising on behalf of my son and everyone who lives with CF. support I know we can get there. It may not be tomorrow, or in a year’s time. But with It is people like Jo who give me hope for a cure for CF. With Jo’s drive, passion and support I know we can get there. It may not be the help of people like her we can do it, we tomorrow, or in a year’s time. But with the help of people like her can make it happen." we can do it, we can make it happen. I just wanted to tell the world about my wonderful friend Joanne Jo bought raffle books, printed up flyers and information to go Pirrone and what a difference she has made to my life. I feel very on the front of each book. Once Jo reached $100.00, I told her blessed to have her in my corner, pushing for such an important that was enough, but she wasn’t happy with that. She wanted cause and one which means a lot to my family and me. Thank you to keep on selling to raise more money for CF. She asked all the so very much my dear, dear friend. We love you very much and people where she works and took the raffle books to all her family thank you for all your hard work. functions and events and even got her husband to sell them at REGULARS cfconnections December 2010 | 9 FUNDRAISING NEWS & EVENTS To contact our Fundraising and Events department please call 02 9878 2075, or for fundraising enquiries please e‑mail Sally at firstname.lastname@example.org. For events please e‑mail Eve at email@example.com Stunning scenery, rich history, enchanting villages, a spectacular train trip, great food and camaraderie, as well as raising funds for CFNSW are just some of the reasons you should consider joining a Pedal For Life 7‑day cycling adventure, weaving through the countryside of Otago, on New Zealand’s south island. This quote from a participant in April this year sums it up: “The amazing scenery and our awesome guide made this a week I will always remember. Knowing I was helping families living with CF, while having so much fun, was the icing on the cake.” Please see the brochure included with this issue and visit our website for a detailed itinerary and more information. Places will be limited so, for the love of adventure and in support of CFNSW, book now and get pedalling for Pedal For Life. MELBOURNE CUP LUNCH Racing fever, fashion and fundraising came together as 150 people attended the 6th Cystic Fibrosis Melbourne Cup Lunch at The Castle Cove Golf Club. The event, organised by Roma and Daniel Finnigan, was held in support of CFNSW and Sydney Children’s Hospital Foundation. More than $50,000 was raised for clinical care and research into CF, which afflicts their eight year old son, James. Guests ate sumptuous food and took part in sweeps, live auctions, silent auctions and a horse auction sponsored by The McCarthy Group. 10 | cfconnections December 2010 Blackmores Sydney Running Festival 2010 Team “Runnin g for Cystic Fib rosis” ..... $5,72 5 Benjamen Mor Congratulations to all of you who took part in ris..................... ............. $2,83 0 Blackmores Sydney Running Festival and thank you Team “Hotel C lub” .................. ............... $86 for raising close to $10,000 for Cystic Fibrosis 0 Sarah Parsonag NSW. Here are their results and some of the e...................... ................ $410 runners' stories. Paul Newman ........................ .................... $ 50 From Ben Morris With tight legs, a raging appetite and a bundle of fantastic memories, I can now say that I have run and completed my first marathon. The marathon was part of the Blackmores Sydney Running Festival which took place on September 19, starting at From Team Hotel Club Milsons Point and ending at the Opera House. The marathon Our team is very proud to have accomplished such great results in route (42.1km) encircled, crossed over and doubled back all over our race to help support your foundation. All our team participants the city along closed roads, parks, bridges and expressways. One did an excellent job of obtaining sponsorships and in total we of the most breathtaking parts of the marathon was running managed to raise a total of $1869.25. We all made our sponsors across the Harbour Bridge while it was completely closed to traffic. proud with the great efforts we put in to finish the race. Some It was a great feeling to have finished the marathon and over comments from the team: “I started running a week before the time I expect that the sense of accomplishment will be embedded Blackmores run. It was really tough but I felt amazing after. I’m deeper, although the personal sense of accomplishment was very proud of the whole team, I’m very proud of myself. Will do it only part of it. As I pushed through the fatigue, pain and cramps again next year.” Another said: “I ran the whole race and achieved the thing that was driving me to finish the run was the generous a personal best, I can’t believe it. I hope to run a marathon next contributions of so many who helped me raise money for CFNSW. year with this vibrant energetic team in support of a great cause. At this stage about $2,500 has been raised and donations and pledges are still trickling in. I would like to give a huge thanks to all those who helped me financially by making such generous Remember donations and on behalf of CFNSW, your contributions are literally The Blackmores Sydney Running Festival is a multi‑event day, a life saver. It has been a pleasure to help raise funds for such a ranging from family fun to the full marathon ‑ so put great cause. Lastly I would like to encourage everyone to get out and partake in an event like this and use the opportunity to raise Sunday September 18, 2011 on your calendar now. money for those in much need. Benjamen Morris Hotel Club Hotel Club REGULARS cfconnections December 2010 | 11 65K for 65 Salty Sea Dogs - July 17 Roses Walk The title makes you think of a tail wagging, sand covered, lovable family pet, doesn’t it? It’s back again, the 65K 4 In fact, this was the name that Fiona and 65 Roses Walk‑a‑thon Kent Warren gave to their fund raising Mark March 5, 2011 in the diary, that’s when the fourth annual 65K 4 65 Roses Walkathon will take place endeavour, in deference to their own three around the foreshores of Leichhardt, Drummoyne and Rozelle. year old Mia ‑ a salty sea “puppy” indeed. The past three events have raised more than $260,000 for Cystic Fibrosis NSW. Next year we are looking to take the event to new This is the third year that the Warrens have held this event at heights and will be raising funds for both CFNSW and the CF Clinic at Pepper’s Anchorage, and with wonderful support from Kent’s the Children’s Hospital, Westmead. employers ‑ Peppers Anchorage Resort, and fabulous support from the local community ‑ the function has gone from strength The event retains its existing formats and full details on how to enter to strength with 112 people attending the dinner this year can be found at www.65k465roses.org raising $21,323. Ultra Endurance ‑ A test of your stamina, endurance and mental Linda Cheese (CNC John Hunter Children’s Hospital) and Barbara strength. Join a group of walkers each walking 65km. Anderson (CFNSW) were happy to attend and had a wonderful weekend, taking advantage of the opportunity to stay overnight. Team Event ‑ Get a team together to walk and fundraise. Set the challenge to suit your fitness levels. Although both Barbara and Linda failed at “Heads and Tails” and neither won the “Roar and Snore” package at Taronga Park Zoo, Sponsor ‑ No need to walk, you can simply donate or sponsor a walker. they had a wonderful time at this very successful and fun event. We are aiming for record participation in 2011, targeting 70 ‑ 100 Endurance Walkers, plus up to 300 people participating as individuals Guest speakers were Jacki and Simon Hirst who attended with or part of a team. their youngest son Jesse, who received new lungs on Christmas Eve, 2009. Jacki and Simon are justifiably proud of brave Jesse We need your help to make this event a success and are again calling on and this was obvious as they recounted their experiences. The the CFNSW community to support our fundraising efforts. We are looking for walkers, fundraisers, corporate sponsors and celebrity identities to audience travelled their journey with them, learning about CF and help us promote the event and the cause. If you can help, please contact being inspired at the same time. us through the website or email: firstname.lastname@example.org The date for next year’s Salty Sea Dog fundraising frolic is already With thanks from the 2011 65K 4 65 Roses Organising Committee locked in for the 16th July so please put this in your diaries ASAP. Patrick O’Donovan, Nicci Higgs, Glen Thickett, Pat Borg, Tracey Lamb. Christmas Cards A big thanks to: Many thanks for your support of our annual Christmas card campaign, which is in full swing at the time of writing. We couldn’t do it without the support of our annual team of Christmas card aye rl er Pet nell raze r volunteers who not only come and help us prepare and pack cards but enjoy &G f Cu ne F John annan Clif ’Con Dia great camaraderie and cake. Br O Pam Unsworth comes in regularly to pick and pack the orders and Bronwyn O’Raee is a regular volunteer helping with fundraising and office tasks. If you haven’t bought your Christmas cards yet, you can still order online or ette ela air Swi ft Pam orth contact us at email@example.com ne G Ann am Elai Lyth Ann Unsw lyn nn l Wa rd y onic a Pat nn son n Ros han y-A Wal l Jud lly Gan t Ver nis Rob nwy Mar gney Sue hery iends C fr e Fay a Judy ubby Bro aee Vaug Hea & Peng Nin Herm &h O ’R 12 | cfconnections December 2010 AFIF Charity Golf Day (Australian Federation of International Forwarders) The annual AFIF Charity Golf Day 2010 was held in August at the Twin Creeks Golf and Country Club in support of CFNSW. Every year it brings the freight forwarding industry together and raises awareness for an important charity. The Golf Day was attended by 40 Freight forwarding industry members, sponsors, celebrities and guests. Rebecca Wilson was an inspiring and lively MC and with the help of 32 teams, big buyers in the auction and generous raffle ticket purchases, $20,000 was raised in support of CFNSW. Our sincere thanks to AFIF for choosing CFNSW to be the beneficiary of their annual charity day and to the sponsors and all those who contributed items and participated. The Great Strides Walkathon was held on Sunday October 24 and, Thank you as well to all our sponsors and despite the cold and rain, more than 150 participants braved the elements. Although the weather wasn’t on our side, there was still volunteers who helped on the day: fun, laughter and a very positive energy on the day, especially as Leichhardt Council for waiving the park hire fee everyone knew that more than $55,000 had been raised to help in the fight against CF. Ronnie and Peter from Effective Momentum for the warm‑up Hundreds of bubbles floated in the air as participants took Leigh Valenta from Pro‑tech Corp for the putting competition a moment to reflect on their reasons for being there. After (which unfortunately was cancelled due to the weather) a dynamic warm up with Ronnie and Peter from Effective Jenny Smith and Rotary Club members from Castle Hill, Dural Momentum, they set off on the 7km walk, returning to cheers, live and Dee Why for organising the BBQ music and a delicious BBQ. Although games were abandoned, Peggy the Pirate and Bubbles the Clown created some wonderful Steve Wisbey, our entertaining Master of Ceremonies face painting and Rod the Magician (AbbaDabba) had children Jack Shepherd for his beautiful music and adults enthralled with his performance. Dave & Di from Xpresso Mobile Coffee Bar for donating 15% of Many thanks to all the teams and individuals who participated in their revenue on the day this collective effort. We are so impressed by your dedication and St John Ambulance volunteers for treating our blisters generosity and would like to congratulate every one of you for your part in achieving this record result. Alicia Heymel and her team for putting a smile on the kid’s faces All our volunteers who helped in so many ways on the day Our top individual and top team fundraisers achieved amazing and truly inspiring results. Peter Kantarelis topped the individual list, raising more than $6,000 and Rachel Chrisostomos led the 33 members of Team Chriso to raise more than $10,000 ‑ thank you and well done. Once again, many thanks for your support in our fight against Cystic Fibrosis. We hope to see you all in October 2011 for another Great Strides Walkathon. REGULARS cfconnections December 2010 | 13 Annual Raffle - November 8 The lucky winners were... 1st prize Ken Williamson of Glen Innes Wolgan Valley Resort & Spa, NSW Four nights at Australia’s first conservation‑led, 6 star luxury resort, for two people in a heritage suite with private pool, stunning views and gourmet breakfast, lunch and dinner. 2nd prize 3rd prize Melanie Kozarovski Lyn Sandland of Bexley Stay in touch with the HTC Touch Diamond 2 $1,000 Travel Gift Card Great looks and intuitive controls, with brilliant WVGA large touch Choose your own holiday. Plan where and when, with screen, Windows Mobile operating system, fast web browsing, travel/accommodation to the value of $1,000. 5.0 megapixel auto focus flash camera, FM radio and much more. Elizabeth and Andrew Walmsley sold the winning ticket and received a $100 Myer gift voucher and once again, Jessica Sun sold the most raffle tickets (300 tickets that raised $900) and received a $250 Myer gift voucher. Thank you. Congratulations to the winners and many thanks to all for your support. Kamilaroi Quilters Quilt Show and Raffle Windsor Library, 1‑3 October 2010 In 2001, the Kamilaroi Quilters first raffled a quilt to raise money for Cystic Fibrosis and in 2002, started a tradition of donating beautiful hand made quilts to the CF Unit at The Children’s Hospital, Westmead. This year, the raffle not only raised $2,000 for CFNSW but on November 2, 50 quilts and Careflight Bears were given to the unit to be given to children with CF who are spending time in hospital. The children love being able to choose their favourite quilt from the collection and, after brightening their room during their time in hospital, have something very special to take home and no doubt treasure forever. We would like to express our thanks to all the Kamilaroi Quilters Raffle Winner Rya n Ben tley for raising funds to help support our services and for all the joy Pictured here givin g the quilt to his created by their efforts. mother. In Memory Katrina Dyer 5/09/10 Our deepest sympathy to Katrina’s family and friends. She will be fondly remembered by her friends in the CF community.