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Cystic FibrosisCommunity newsletter • DeCemBer • 2012

Auckland

In thIs Issue introDuCtions& CeleBrAtionsAnother Awesome AwAreness week

meet the new north islAnD fielD worker, melinDA CoomBes

ADult physio servICes – we tAlk to physiotherApist DominiCA horton

British BACkpACker runs length oF nZ For CF

ChAirpersons’ report for 2011/2012

Your storIes

Auckland Cystic Fibrosis Association, PO Box 13385, Onehunga, Auckland 1643, New Zealand. cfauckand@pfrc.org.nz Editor: Wendy Edmondson

Mackenzie Perry meets with

Justin Beiber at Starship

King’s College students collect at Sylvia Park for Awareness Week

Matthew Ryken strikes a pose and gets

2nd in national body building contest

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sChools support Cf AuCklAnDSupport from students in schools all over Auckland helped make this year’s Awareness Week particularly successful.

We were impressed by students’ willingness to take responsibility for organising events and volunteering time to help others in their community. Your schools and communities can be proud of you!

Students from Rosmini, Pakuranga College, Macleans College, Glendowie College, Albany Senior High School, St Peter’s College, and Bayswater School all devoted their time to selling (and eating) chocolate fish.

Mufti days were great fundraisers and Diocesan School, Waitakere College, Takapuna Grammar and Bucklands Beach Primary raised a total of $4557.25 with their mufti days.

Sacred Heart College held a collection,

raising over $1000, after ex student Alex McKay gave an inspiring talk about living with CF.

Students from Pakuranga College, Rosmini College, St Cuthbert’s College and King’s College gave up their free time to successfully collect donations and raise awareness at different locations around Auckland.

If you think your old school or your children’s school might be interested in helping fundraise for CF next year, please can you contact the CF Auckland Branch office and let us know details of the school and a contact name. Mufti days or funky shoes or hats days are great fundraisers and also give an opportunity to raise awareness of CF within the school community.

AwAreness week 2012 Total so far: $33,000 with more to come

Having not been with CF Auckland for an Awareness Week before, I really did have no idea how much space 89 cartons of chocolate fish would take up. They filled all of the new storage space at the Branch office and a large proportion of the meeting room too. I was convinced that we would not be able to sell that many - but out they went - thanks to help from Jane Drumm and the branch chairpersons, Anthea Wendelborn and Amanda Blakey who gave up a morning to get fish and collectors packs ready as well as co-ordinating their own collections at malls and chocolate fish sales. It really would have been an impossible task without help.

Having been put off by the sheer amount of chocolate around me, I did not eat a fish until my children sold some at their soccer game. I was surprised at how yummy they are. A big THANK YOU goes out to everyone who sold chocolate fish to their friends and families, their workplaces and at their schools. Adele Tonks took a massive 48 boxes of fish as well as organising family and friends to collect in Albany.

Along with chocolate fish sales, collections took place in streets and malls all over Auckland. Stephanie Payne ran a ‘Trade Me’ auction again, selling ‘Optimus Prime’ pictured below.

Media coverage was strong this year with National Office securing radio adverts

all week. Branch Chairperson, Amanda Blakey, put her name down for ‘the best song ever written’ on National Radio and got a full ten minutes coverage on the Friday, her interview prompting the next interviewee to say how inspiring she was. Olympic rowing coach, Richard Tonks, whose granddaughter Portia has CF, gave an interview to ‘Close Up’ also drumming up lots of support for the cause. Last year’s A2 and A3 posters of Luke were generously reprinted in the blue CF colours by the Eliott/Sinclair family and their

business, APC Innovate.Other organisations that gave support

were LJ Hooker, Ponsonby, who responded to a last minute plea for help and collected $713.80 in one day at Victoria Park New World and Howick Lions held an early fundraising Trivial Pursuits night and have since held another ‘ad hoc’ collection at a meeting with other Lions clubs raising yet more. Thank you again to Kindercare Learning Centres for their generous donation to a cause close to their hearts.

introDuCing melinDA CoomBesNew North Island Fieldworker, Melinda Coombes, based at the CF Auckland branch office, tells us about her new role, previous experience and emigrating to New Zealand.

Hello everyone! My name is Melinda Coombes and I recently started as the new North Island Fieldworker. I was drawn to this role as I like working with people in a supportive way and have previously worked as a social worker in many different settings. I started work at the beginning of October and have been shadowing Sally Carron for a few weeks. I am grateful to Sally for sharing her wealth of knowledge of the CF organisation and community and for showing me the ropes. Attending an Auckland Branch committee meeting allowed me to meet the dedicated parents who care so much about their CF community. I have also flown down to Christchurch to visit National Office and again for the staff retreat at Hanmer Springs where I was made to feel very much part of a team. I loved meeting all the hardworking CF staff and am sure their inspiration will rub off on me. The retreat was informative but also like a holiday and I’m sure I’ve gained a pound or two from all the lovely food!

I emigrated from South Africa to New Zealand with my husband and grandson years ago and lived in Tauranga. We have since moved to Howick and been joined by my daughter. I have another adult son, Shaun, who lives with his wife Jen in South Africa. The last time we went back there was in December 2011 for their wedding, which was lovely but also reminded us why New Zealand is now our home. We have settled in well and love the outdoors lifestyle and the scenery. Jared, our grandson, loves having the freedom to ride his bicycle around and we find New Zealand to be safe and friendly. We take part in many more outdoor activities than before and still have lots to explore in our adopted country.

As a social worker in my native South Africa I had many years of varied experience. I worked with young offenders, counselling families, crisis intervention and in a children’s home. Since we

immigrated to New Zealand I worked in the Bay of Plenty area for the MND (Motor Neurone Disease) Association as a fieldworker where I made home visits and researched related topics. As with the CF Association, that role involved a lot of travelling. Since then I have been working with a pain support group for elderly patients. I am hoping my new role will develop my skills, knowledge and experience in health social work.

I have started to make hospital and home visits and have the pleasure of meeting members of the CF community, who have been very welcoming. I am looking forward to getting to know more of you in the near future.

movIe nIght A sell-out suCCess by Wendy Edmondson

On 26th August, CF Auckland held their Movie Night fundraiser at the Bridgeway Cinema in Northcote. Guests were greeted with a glass of red or white wine or juice and had a chance to mingle and catch up with old friends before being taken through to their seats to watch ‘Hope Springs’. The film was a dark comedy about long term relationships and starred Tommy-Lee Jones and Meryl Streep.

Branch Chairperson, Anthea Wendelborn, gave a heartfelt speech and the guests were

then invited to look under their seats. Lucky winners found chocolate fish with numbers on them that corresponded to numbered spot prizes, including a hamper of Italian food and a manicure treatment. Thanks go to the Bridgeway Cinema for making this such an easy event to run.

The movie night was an enjoyable event and an effective fundraiser for the Auckland branch. Watch out for a similar event next year!

Sunday 26th August 2012

BridgewAy TheATre , NorThcoTe

glass wine 7.30pm, movie begins 8pm.

TickeTS $25

CF Auckland invite you to

a special screening of Hope Springs

Please contact Wendy edmondson, CF Auckland Branch Coordinator

on ph 636 0827 or cfauckland@pfrc.org.nz

AmAndA BlAkey, CF Co-Chair, ph 575 2744 or richnamanda@xtra.co.nz

Jill ThorrAT, Committee, ph 638 8714 or jathorrat@hotmail.com

‘Optimus Prime’, kindly donated by Matt and Renee Sterne was the most unusual item in the Trade Me auction run by Steph Payne

Elliot and sister Lauren collect for CF at Remuera New World

AWARENESS WEEK 2013

PLEASE NOTE

Due to clashes with the farming calendar and the

Australasian CF Conference, which will be held in Auckland

in August, next years Awareness Week will be held from

13-18 October.

Melinda Coombes at the Auckland Branch office

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Adult physiotherapy services at Auckland City hospital Aut physiotherApy stuDents visit AuCklAnD BrAnCh offiCe‘Third year’ physiotherapy students from AUT, Shannon Thompson, Jasmine Todd and Lindsay O’ Kane came to spend a day with Sally Carron, the North Island Fieldworker, Branch Chairperson, Anthea Wendelborn and Branch Co-ordinator, Wendy Edmondson at the Parent and Family Resource Centre in Onehunga.

Sally put together a programme where she explained how CF affects the body physically and also how it affects PWCF and their families emotionally, focussing on how professionals can become more sensitive to families’ needs and emotions. Anthea gave a parent’s perspective on coping with a CF diagnosis and managing the medical regime and Wendy showed the organisation of the hospital gift packs and vouchers and the newsletter. All three

students were interested, enthusiastic and kind enough to give feedback on their time at the Association. Some of their feedback is included here:

Q. What made you want to find out about CF?

Shannon: A friend has CF and I am interested in finding out more about respiratory physio[therapy] prior to a placement on the medical ward at Auckland Hospital.

Jasmine: We had to organise a one day placement and I thought CF would be incredibly interesting as a family member of mine has CF and my main aspiration is to become a paediatrics physiotherapist for children who have CF.

Q. What did you find most helpful/useful about your time here?

Lindsay: I thought it was brilliant to speak to Sally and learn how to portray news to patients, learn about CF and learn about how families are affected and what the foundation does. I also loved talking to the parent, she was amazing and she talked with such emotion and love.

Shannon: Everybody was approachable, enthusiastic and full of interesting knowledge. The programme was well thought out and will assist hugely in our assignments. Having Anthea come in to share her personal experience with her daughter and CF was really interesting and provided a new perspective on the ‘lived experience’ of CF.

Q. Are there any more comments you would like to add?

Shannon: This one day placement was a great experience and was of great value to my developing a broader understanding of physio[therapy] and health within New Zealand. [I] highly recommend the CF Society for students studying health and wanting to broaden their knowledge.

We wish Lindsay, Jasmine and Shannon the very best for their studies and future careers.

Students Jasmine, Shannon and Lindsay meet with parent, Anthea Wendelborn

CeleBrAting 21 yeArs of the stArship founDAtion

Vaughan Somerville was invited to be a guest speaker at the 21st Birthday celebrations of the Starship Foundation. He spoke from a personal perspective about what Starship has done for him over the years, his own journey with CF and what the hospital means for him. There were about 100 people at the function, including representatives of the largest corporate supporters of the Starship Foundation, their Five Star Sponsors (ASB Bank, Mercury Energy, Barfoot & Thompson, Vodafone and The Warehouse), the Starship Foundation Trustees and ADHB staff and management including Sandra Murphy from Ward 26B. Communications and Marketing organiser, Cindy Carleton stated, “Starship Children’s Hospital will be celebrating its 21st birthday with a variety of activities over the coming year, yesterday was just the Foundation’s little internal celebration with our nearest and dearest.”

Vaughan Somerville and Dame Rosie Horton, from Starship Foundation, cut the 21st Birthday cake

CAring for your neBuliserYour nebuliser looks after you but to work effectively it must be cleaned well and checked regularly. Here is the up-to-the-minute guide to caring for your nebuliser from Auckland City Hospital.

You require treatment, which needs to be given with a nebuliser bowl and compressor. Some treatments e.g. antibiotics are in powder form and these need to be turned into a liquid for use in a nebuliser unit. (See pamphlet for “making up” the antibiotic). Always nebulise your antibiotic after a physiotherapy session.

EQUIPMENT CHANGES:• PariLCStarbowl&exhalationfilter

changedyearly• Twofilterpadsusedeachweek(onefor

mornings&oneforevenings–leavetodryfor24hours–endofweekthrowbothaway)

• 2syringesandneedlesusedeachweek• Changetubing6monthly• “Sharps”containerexchangedas

required• Compressorstobechecked&serviced

yearly-contactCFAssociation• Filtersoncompressorstobechanged

whendiscoloured(oryearlyatservice)

EQUIPMENT:• NEBULISINGBOWL&FILTER(closed

ventingsystem)e.g.PariLCStar• COMPRESSOR(mediumoutput)

e.g.PariBoyTurboWith a CR 60 compressor (high output)

use a hose clip to keep tubing attached.

HOW TO USE:• Anyproductbeingnebulisedhastobe

madeuptoaminimumof4mlsoffluidforeffectivenebulisation.Normalsalineistheusualadditiveto“makeup”the4mls

• RemovetopoffPariBowlandplacemedicationandmakeupto4mlbyaddingNormalSalinesolutionintobowl.Replacetop

• Attachtubingtobowlandcompressor• Turncompressoronandafinemistwill

blowfromthebowlmouthpiece• Keeplipsfirmlyaroundmouthpiece• Sitinanuprightposition• Nebulisingtimeshouldbeabout10-

15minutes.Tapsidesofbowltowardsendofnebulisingtime.Nebuliseuntilbowlisdryor“spluttering”.

CARE & CLEANING:• Aftereachuse,dismantle&washbowl,

exhalationfilterandmouthpieceinwarmsoapywater,rinsewellandleavetodryinwarmplace.Donotuseabrushasthismaydamagethefinejets.Leavefilterpadtodryfor24hours–donotwashfilterpadortubing.Placeallpartsincoveredcontainerwhendry.DONOTUSEWET!Onceaweek,dismantleandplaceallpartsofbowl&filterintopotofboilingwaterandboilfor10minutes(notfilterpadortubing)

• Drytubingbyturningcompressoronwithoutbowlbeingattached

• Keepcompressorfreefromdust&dirtbywipingwithdampclothweekly.

Compiledby:JanTate,CysticFibrosisNurseSpecial-ist,StarshipChildren’sHealthMay,2005:CathLamontCFNSReviewedforAdultservices2010SSH/W13017/002.

DominiCA horton, the new Cf physiotherApistFor those that haven’t met me yet, I am the physiotherapist that has recently joined the CF team.

After training in the UK and then working there for five years, I decided it was time to make the move to New Zealand. So, two years ago, I jumped onto a plane, not knowing what to expect, survived all that New Zealand has to throw at you including jumping off various bridges and out of planes and 2 years later I’m still here!

Some of you may have seen me around Auckland Hospital as I spent the first 2 years working on the intensive care unit here, and then 3 months ago, following Raewyn’s retirement, I moved into this position (big shoes to fill!!).

I have been welcomed into the ward and CF teams and look forward to working with

the team in the future….and now seems like a good time to thank all the staff for their support in my new role!!

I was lucky enough to work with some great physiotherapists in the UK CF team who showed me how much physiotherapy can offer to people with CF and I plan to continue this here in Auckland.

There’s a lot of research into the benefits of exercise for people with CF and this is an area which I am looking to develop here - starting with our new exercise bike that has been kindly donated by the CF association for use on the ward…and please don’t be put off by the picture…we know exactly what we are doing….sort of.

Dominica Horton, pictured with a colleague, taking possession of the new recumbent exercycle, smiling before the realisation hits that she might have to assemble it

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CF GAlleRy NeWS DeCemBer 2012

Paige from Gisborne looking

radiant before her school prom

Kassie, learning how to keep hands clean at clinic

Maddison, visiting Starship from Palmerston North, with baby brother Mitchell

Brody looking pleased as punch

with his new motor

Latai visits clinic with a big smile

Portia loving life Leo all rugged up against the winter cold

Kaylee meets Rebecca Scoones,

Starship physiotherapist

Demi with her older sister5 month old Kaylee is ‘Pretty in pink’

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mAtthew wIns sIlver At nAtIonAl BoDy BuilDing ContestMatthew Ryken talks about his ‘transformation’ through the sport of bodybuilding, competing nationally and why having CF should not be a bar to completing your dreams.

For around one year now I have been weight training. What started out as more of a hobby and a way to go and have some fun soon became a serious thing to me once I saw some progress in my health and body.

It was not until I moved from my old gym to what is now my new gym (Muscle & Fitness) that I was introduced to the actual sport of bodybuilding and competing on stage. Before anyone had convinced me or suggested I do a show, I was sold on the

idea! So I started preparing towards my first contest around 3 months away from it - 3 months away from my contest and my body wasn’t looking so flash. No one really had faith that I would be able to do it either, except for one close friend who I look up to like an older brother! I told him every day at the gym “Don’t worry, I will ‘bring it in’ on stage”. He said he trusted in me to do so as not only would I be letting myself down if I didn’t compete or look good, I would also be letting people down that I knew were supporting me.

The months turned to weeks and weeks turned to days. I was about 10 days away from my contest and the intense dieting and training was taking a toll on my mind, body and immune system and I got quite sick (typical Cystic Fibrosis luck). Cath Lamont, my CF Nurse, called me and suggested it might be wise for me to be admitted. I wasn’t happy but I knew my health came first so I said if need be, I would come in to hospital! Thankfully they put me on some antibiotics and said I would still be able to do the contest! I was very relieved to say the least.

The day of the contest came and I was all tanned up and crazy tired! I competed in the Waikato NZIFBB (New Zealand International Federation of Body Builders) Qualifier Show and after a day of posing under intensely hot lights I was able to place second in ‘Teenage bodybuilding’ and 3rd in ‘Men’s Physique’! The weekend after were the NZIFBB National

Champs, where I placed 2nd in Teenage bodybuilding! It was a great experience and I will likely continue to compete in the future! Weight training and bodybuilding has truly changed my life, it has changed my perspective on life and people and I am a lot healthier and a [more] positive person for it. The one lesson it has taught me is the more hard work you put into something, the more you get out of it! This rule applies across everything in life and it is something I live by now! I am 2 weeks away from completing my Personal Training Certificate and once that is done I will commence my own personal training business which I already have invested a lot of time and money into! My ‘transformation’ has been a crazy one! In 6 months I was able to put on 10kg of lean muscle through hard dieting and weight training! Even with Cystic Fibrosis, anything is possible, so never let it limit you in life!

British BACkpACker to run the length of new ZeAlAnD in AiD of Cf new ZeAlAnD Dan Burgess wrote to Wendy Edmondson about this ambitious run which will have started on 1st November 2012 and will hopefully be coming to an end just before this newsletter comes out. Dan will be running supported by his wife Sarah.

Q. Tell us a bit about yourselves and how you came to be running in aid of CF New Zealand.

Our home is in Sheffield in the UK and around 18 months ago we left, in order to escape a very boring routine that we both found ourselves in. We’re now coming to the end of our working holiday in NZ, but not before one last adventure!

I have always had an interest in stories of extreme endurance, survival, adventure etc. Having read books about ultra running, I have often wondered if I am capable of doing something like that. So, when the end of our trip appeared on the calendar, I wanted to do something that would really end our travels with a bang... and this was the result. Once the idea had formed, the ball just kept rolling and it seemed only sensible to use it as a way to raise some money for charity in the process. As my Grandfather (now deceased) was suffering with Parkinson’s, I felt it would be nice to do something to show I was thinking about him. It’s just sad that he never got to see me complete the run, as I know he’d have liked to hear about it.

When we first arrived in Auckland we didn’t have much money and had it not been for the amazing hospitality of Sarah’s old Kiwi friend Jess, our experience may have been completely different. I was blown away with how kind she and her family had been to us, and I wanted to show my appreciation in some way. I know that CF is a charity close to Jess’ heart, so it seemed like a nice way of saying ‘thank you’. I have also since learned that it’s good to promote physical activity to children with CF so, coincidentally, this is quite an appropriate way to raise some money! Whatever amount we manage to raise, it would be doubly satisfying if this run inspires anyone to become a little more physically active.

Q. What training have you been doing in preparation for the run and how is that going?

Blimey, where do I start?! 6 months of training probably isn’t as much as I’d like

for something like this... but when do you ever feel ready to run 2200km?

I began doing sporadic training runs of about 16km until I could do that distance without feeling tired or achy the next day. Over the course of a few months, I gradually increased the distance and frequency of the training (nothing ground-breaking really) and got a bit more scientific with my routines. Although I know that it’s not necessarily the best way to approach this run, I got quite focussed on doing as many kilometres per week as I could. I was doing 192 kilometres per week at my peak. I felt tired all the time and almost forgot what it felt like to have ‘fresh legs’, but I am pleased to say that right now, I’m resting/tapering off from training, to allow my limbs to recover in time for November 1st... when the real difficulties begin!

Q. Have you been following a special diet for the training and/or run?

I tried to. There are ‘ultra runners’ who swear by certain types of diet... raw fruit and veg and vegan diets often get talked about on running forums, but I have to say I’m just not that dedicated. Like most people, I go through phases of eating healthily, swearing that I’ll stick to it this time... only to be drinking beer and eating pork-belly burgers the following day! I do always make sure that after exercise, I eat some carb and protein rich foods to aid recovery, as well as a good dose of vegetables but that’s as strict as I get. When you look back across history, there are plenty of really high achievers that never had access to expensive energy drinks, protein shakes or the sports nutrition information that we have today, so I have always figured that if I just try harder in training, I can eat and drink (pretty much) whatever I want.

Q. What support are you getting along the way?

My wife Sarah is my support crew. She’ll be giving me food and drinks along the way and has been ‘the brains’ behind the operation. As the runner I often get all the

praise and recognition, which is unfair, because my task is a relatively simple one. Every day, all I need to do is keep moving forward, and in training that’s all I have needed to concentrate on. Sarah, however has arranged accommodation, planned the route, done the budget for fuel and food... everything. In return, she’ll get to listen to me moan about how much my feet hurt each day, as I devour the meal she’s prepared for me. She’s awesome! We’ve also had offers of free accommodation along the way, which has been a total surprise and yet another example of Kiwi generosity. Hopefully some people might like to run with me too... as long as they’re happy to go (very) slowly.

CF Auckland wishes Dan and Sarah the best of luck for their adventure. Just before going to print they were at Waipara. You can find out how the run has gone by checking out their blog on www.belter_uk.com or their facebook page: bluff 2 cape. Both sites give links to how to donate money - so please send them to your friends, family and even minor acquaintances to see if we can get lots of donations.

Dan Burgess pictured with some of the accessories he will need to help him complete his 2200km run

Dan near Kaiapoi on Day 11 of his run

Matthew’s hard work and determination pays off

Bouquets:We wish to recognise, with thanks,

the support given to CF Auckland Branch from the following organisations, companies and individuals:

Community Post – for supplying a box of 500 prepaid envelopes that should keep us posting things for quite a while.

Lions Clubs of Auckland – for holding an impromptu collection at one of their big meetings, raising over $500.

Brian Richardson and the team at L J Hooker, Ponsonby – for responding to a desperate call for volunteers and collecting donations at New World

supermarket in Victoria Park.Cameron Pools – for selling

Entertainment Books and giving the profits to CF Auckland.

NZ Steel – for donating used laptops to the branch for passing out to our community where needed.

Other Supporters – everyone who volunteered their organisation skills or time to help out with Awareness Week and Movie Night. We really appreciate your help and support as without this we would not be able to raise funds for the medical equipment and voucher support that we provide to our members.

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ChAirpersons report 2011-12Co-chairpersons Anthea Wendelborn

and Amanda Blakey wrote this report for the AGM. Here is your chance to see what your branch has been up to this year.

The past year has been one of consolidation for the Auckland Branch. We extend our enormous thanks to you all for the various contributions you have so generously made. Funds raised are used for many purposes including medical equipment, newsletters, hospital packs, food, supermarket and parking vouchers, PFRC rent, conference attendance and Branch Coordinator’s salary.

CF Auckland Branch raised $34,379.00 during the 2011 Awareness Week, a brilliant endeavour! The Annual Street Appeal was again extremely successful receiving amazing volunteer support from our CF Community, their friends, colleagues and from Auckland senior school students.

Grateful thanks to Robyn Somerville, our Branch Grants Officer for the applications made throughout the past year. Robyn has been successful in gaining grants from North & South Trust, Contact Energy and from Pub Charity. Ongoing grant

applications for medical equipment expenses continue.

Auckland’s CF Committee continues to host coffee mornings, ladies lunches, and an annual Christmas party. Our coffee mornings, which we aim to hold each school term, move around the City, and are a great place for CF mums to meet likeminded CF mums.

As a Committee we welcomed two new members last year, Rachel Elliot and Chris Elliot. It has been lovely to have some new faces around the table and new ideas! Thank you for being so giving of your time and energy to assist the wider community, your efforts are truly appreciated.

Wendy Edmondson joined us in March this year and has done a superb job coming on board with the many and varied requirements of the role.

In addition to thanking all our Branch Members and our Committee Members for the time and energy given we’d like to make special thaks to Sally Carron (North Island Fieldworker), the CF teams at Starship and Auckland Hospitals, especially Jan Tate (CF Nurse Specialist at Starship) and Cath Lamont (Adult Services CF Nurse

Specialist), and our sponsors - Boehringer Ingelheim, Humdinger Design, Subway and the Howick Lions Club. We also would like to acknowledge those family and friends who generously donate in memory of their loved ones. We sincerely thank you for your continued support.

It seems, as usual, that the previous twelve months have flown by. Helping the Auckland Branch provide as much support and care to PWCF, and their families, continues to be the sole aim of the Committee. The main challenge faced by the Auckland Branch is ensuring that the services we provide are sustainable and can be developed as the needs of the CF community change. The Auckland Branch is constantly growing – let’s continue to share our experiences and what we have learnt, communicate our ideas, frustrations and hopes, and lean on each other when necessary: these are the traits of an important and caring support network.

P.S. – at time of printing, funds raised, after expenses taken out, for the 2012 CF Awareness Week (including the Movie Night) in Auckland total… $33,744.77

Report abridged, full report available on website or request.

BrAnCh newsSome of the recent activities and events in Auckland – and those coming up – by Wendy Edmondson.

NeW exeRCyCLe: Dominica Horton the new Adult Physiotherapist at Auckland City Hospital requested that the branch provide a recumbent exercycle for use on the wards. Thanks go to Dominica and colleagues for building the bicycle – no mean feat!

LOveLy ‘THANk yOu’ FROm PAReNT: I wanted to share this email sent in by mum, Rohan Dowling – it made us in the office feel very appreciated: “I just wanted to send a big thank you for the lovely - uplifting! - gifts and vouchers during our two unexpected stays with Starship so far this winter. While we come to terms with this being [our son’s] and our life, we have realised we are lucky and grateful that we have such a supportive ‘family’ in terms of the Starship CF team along with the CF Association. It’s the little things and knowing you’re in someone’s thoughts that get you by while you’re in your four wall cell with bub!”

SuBSCRiPTiONS FOR 2012/13 NOW due: Thanks to all those who have sent in their subscriptions for the Auckland Branch, we really do appreciate the support towards the services we give to our community. If you have not yet subscribed to for 2012/13, there is another form included with this newsletter.

STARSHiP NuRSe SPeCiALiST ATTeNdS iNTeRNATiONAL CF CONFeReNCe: Jan Tate attended this conference in Dublin in August. Auckland Branch helped with funding for the conference registration.

CHRiSTmAS FuNCTiON FOR PAReNTS ANd CARegiveRS: To be held at Jo and Huw Ringer’s house on Saturday 8 December.

COFFee mORNiNgS: Three parents’ coffee mornings were held this year with good attendances at all. There will be more next year and we would love you to come along and meet our parent

community. These are a great opportunity to meet people who understand and have lived through the issues you face when you have a child with CF.

PLANNiNg meeTiNg – SATuRdAy 9TH FeBRuARy, 8.30 -10.30Am: Auckland Branch is having a planning meeting to come up with a strategy for Awareness Week fundraising and a list of equipment needs and important dates for 2013. If you think you might be interested in taking a more active role in the Branch you are welcome to come along and get a feel for what we do – coffee and cakes provided!

CliniC news, novemBer, 2012The 35th Cystic Fibrosis European Conference was held

in Dublin in June, this year. Dr Mirjana Jaksic and I were lucky enough to be part of the conference and, even though Dublin turned on miserable weather for us, we listened to the presentations, met friends from past conferences and updated our knowledge on different aspects of CF care. Thank-you to the Auckland CF Branch who supported me with funding for the registration fee. My poster abstract was selected as part of the poster displays and I presented a poster of a study done by Dr Cass Byrnes, one of our senior registrars and myself – titled “Treatment and Treatment Success in Children with a First Pseudomonas aeruginosa infection”.

Our big change in the clinic over the past month is having a new CF Field Worker / Social Worker as part of our extended CF team. Sally Carron has worked with the Starship families for many years but is now leaving paediatrics to work with adults at Auckland City Hospital. Good luck Sally with your change of direction; we have loved working with you, your professionalism and kindness and I know we will still have lots of contact with you. Welcome to Melinda Coombes, who is replacing Sally and will be at the CF clinic each week. She will continue to support the children and families and we look forward to working with her.

There have been a few changes to the allotment of the Carer Support Days and I know some of you have had a decrease in hours or days. This has come about because of the ADHB (Auckland District Health Board) funding. The ADHB has allotted a certain amount of money for respite hours to be shared with all “medically fragile children” in the area. The allotted

hours are assessed each year on medical needs for each individual child and this need may change from year to year. The assessment is based on how unwell the child is and how much demand there is on the parent for ongoing treatment and care of the child. For many years we have been able to recommend the same number of days but now, with reduced funding, the CF team has to be mindful of the reduced funding that is available and recommend days appropriate to the respite needed. We are fortunate in the Auckland region to have access to this pool of funding as other areas in NZ do not have the same access and those families miss out on much needed respite days. The system is flexible and as we review the children and families annually we can recommend more days to be given if there is more respite indicated. Please let me know if you feel the number of respite days allocated to you has changed so we can discuss and review if your child has had an increase in medical needs and care.

Ward 26B is soon to be given a much needed refurbishment. Within the next 2 weeks the ward is moving to Ward 25A (on level 5) for the many months that is needed to rebuild 26B. The new ward will have single rooms only (no shared rooms !!), many with attached bathrooms and toilets. This will take away some of the stress that is associated with coming into hospital – knowing that you and your child will have a room to yourselves. The rebuild is planned over the summer months as fewer children will be admitted. We are all looking forward to our new ward and hope to “showcase” it in the middle of next year.

sImon heAth AnnounCes engAgementSimon Heath gets engaged to girlfriend, Audrey and tells us how he ‘popped the question’ at a romantic getaway in Rarotonga.

Last June my partner Audrey and I went away on holiday to Rarotonga. I had known for months that some friends of mine were coincidentally also travelling there on a separate trip the week before we were to go and I saw an opportunity to carry out my “plan”. I asked my friends to bury some “treasure” on the island for me while they were there and they were kind enough to agree. They buried the box that I gave them on a beach and drew us a map with instructions on where to find it.

Audrey and I spent a week in the tropical paradise of Rarotonga, mostly in a beautiful resort by Muri beach. However, we did wander off to spend a day on another “random” beach that we “came across”. It was a fun-filled day spent lying in the sun, swimming and building sandcastles. When we were done, on the way back to our resort, I led her on a treasure hunt.

Audrey had no idea what was happening at the time but went along with the fun anyway. According to the map, I had to find the “hugging trees”, count eight palm trees from the left, and start to dig. After digging in the sand on my knees for awhile, with my girlfriend standing next to me thinking I’d gone insane, I finally found the buried box.

I took out the ring, and proposed to her on the beach. She said yes! We are getting married in March.

What a romantic proposal – Audrey seems to have found a real treasure! We wish Simon and Audrey the very best for their wedding plans and married life.

Is that something glinting in the sand?

12

Auckland Hospital - Monday-Friday, 8am-5pm, Ph 0800 476 123, 307 4949 ext 25870#

For genetIC servICes

nAtIonAl oFFICe

Respiratory Consultants: Dr Cass Byrnes, Dr Julian Vyas, Dr Mirjana Jaksic, Dr Naveen Pillarisetti

CF Nurse Specialists: Jan Tate Ph 307 4949 ext 6556#Mob 021 412 738

dietitian: Jenny Heyward Ph 307 4949 ext w25081#

Physiotherapist: Rebecca Scoones Ph 307 4949 ext 6658#Mob 021 241 5342

Lung Function: Cathy Douglas Ph 307 4949 ext 6483#

stArship Cf teAmThe CF team is available during the hours of 8am to 4pm. If you have an urgent problem outside these hours either telephone your GP or call Starship and contact the paediatric medical registrar on 307-8900 or 379-7440 or visit www.starship.org.nz

Respiratory Consultants: Dr Margaret Wilsher, Dr John Kolbe, Dr Mark O’Carroll, Dr Sally De Boer

Clinical Nurse Specialist Respiratory: Cath Lamont Ph 307 4949 ext 25186#

Mob 021 345 423

dietitian: Lisa Guest Ph 307 4949 ext 23354#

Physiotherapist: Dominica Horton Ph 307 4949 ext 22821#

Psychologist: Joyce Fennell Ph 307 4949 ext 25181#

AuCklAnD ADult Cf serviCes

1st Floor, Broadway, 62 Riccarton Road, Christchurch PO Box 8241, Christchurch Phone 0800 651 122 www.cfnz.org.nz

Note: All forms or applications to National Branch can be downloaded from this website (i.e. Breath4CF forms)

Kate Russell Chief Executive, Email: kate@cfnz.org.nz Ph: (03) 341 8024, Mob: 021 452 831

Julie Clemett Administration ManagerEmail: julie@cfnz.org.nz, Ph: (03) 341 8014

Caroline Wagteveld-McKenzie Fundraising & Events Co-ordinator Email: caroline@cfnz.org.nz, Ph (03) 341 8026

Sally Carron North Island Field Worker Mob: 021 126 1237, Email: sally@cfnz.org.nz

Sue Lovelock South Island Field Worker Mob: 021 0222 1203, Email: susan@cfnz.org.nzMelinda Coombes North Island Field WorkerMob: 029 773 1398, Email: Melinda@cfnz.org.nz

Co - Chairperson: Amanda Blakey Ph 575 2744, richnamanda@xtra.co.nz

Co - Chairperson: Anthea Wendelborn Ph 478 3854, anthea.w@me.com

Treasurer: Allyson Harvey Ph 638 8123, paulandallyson@xtra.co.nz

grants: Robyn Somerville Ph 624 2448, rostrev@ihug.co.nz

Local National Board member& Board Chairperson: Jane Drumm

Ph 817 4753drummsj@ihug.co.nz

Auckland Branch Co-ordinator:Tuesday, Wednesday, Thursday Wendy Edmondson

Ph 636 0351, DDI 09 636 0827Mob 022 109 1524, cfauckland@pfrc.org.nz

North island Field Worker:Tuesday, Thursday Sally Carron

Ph 636 0351, Mob 021 126 1237sally@cfnz.org.nz

North island Field Worker:Monday - Friday Melinda Coombes

Ph 636 0351, Mob 029 773 1398 melinda@cfnz.org.nz

AuCklAnD BrAnCh ContACts

DiARy DAteS mark these upcoming dates on your calendar. Remember all Assn meetings are held at 7:30pm, 581 mt eden Rd (Asthma Society Rooms).

8 december 2012 – Parents and caregivers Christmas Party9 February 2013 – Auckland Branch planning meeting (Asthma Society Rooms)2 march 2013 – Taupo Ironman Event

5 march 2013 – Auckland Branch Meeting17 - 18 August 2013 – Australasian CF Conference14 – 20 October 2013 – Awareness Week

thAnk Youto all those who have

contributed articles and photos to share with our

community.

orgAnIsAtIons who support Cf

in AuCklAnD

The views expressed in this newsletter are those of the individual contributors and

are not necessarily supported by the Cystic Fibrosis Assn or the Editor.

Design byAuckland CF website: www.cfauckland.org.nz