In this issue: CF Artwork, Pharmac Meeting + Kalydeco, New Awareness Week Tag Line, Pilgrimage in Memory of Maddy, Australian CF Conference Live Streamed & Mineral Pools

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CF Paints a Colourful Picture in Christchurch

Q. What do you get when you cross a Pseudomonas researcher with an artist for the Art and Genetics exhibition in Dunedin? A. Images that are evoked from cystic fibrosis - as seen above.
Otago University Professor Iain Lamont, who is researching the role of oxygen in the effectiveness of antibiotics for Pseudomonas, was matched with artist Susan Nunn who wanted to incorporate a CF theme into her pieces - this became the major influence for her work that was on display at the museum this month.
Sue's work is entitled Beauty is the Beast and in the catalogue she describes what she's trying to capture on canvass:
"In this artwork I hope to draw a parallel between science and cystic fibrosis by using a series of words they have provided.
The beauty of the bacteria growing in the lab is in stark contrast to the ugliness of how it manifests itself in cystic fibrosis.
The coloured backgrounds are taken from the laboratory Pseudomonas bacterial growths, while the choice of blues for the beads is from Cystic Fibrosis New Zealand colours. The quotation has been used in a cystic fibrosis awareness campaign.
The words provide both a positive and a negative meaning depending on where in the link a person stands. For example:
HOPE
There is HOPE for a cure,
There is HOPE for finding the right antibiotic,
There is HOPE to be able to breathe easily,
There is HOPE that the suffering eases,
There is HOPE for a future,
And there is HOPE for a greater awareness and understanding for the sufferers of this debilitating disease."
- Susan Nunn, Artist

Pharmac Meeting + Update on Kalydeco

This month CFNZ met with Pharmac's medical director, respiratory therapeutic group manager and devices category manager. The aim of the meeting was to see if Pharmac could take over the funding of the compressors and nebulisers that are provided by Cystic Fibrosis New Zealand.
Pharmac was extremely concerned to hear that some DHBs provide equipment while others don't and told us Pharmac had a good track record in ironing out these inconsistencies. While they have not taken over the funding of devices from DHBs yet, they are planning to in the future so the meeting was timely in bringing safety issues and differences in care around NZ to Pharmac's attention. Pharmac has asked for more information and we will continue to work with them.
We also asked Pharmac medical director Dr John Wyeth about whether there had been any movement towards funding of Kalydeco and if there was anything CFNZ could do to help. He told us that Pharmac could not negotiate while Vertex was not currently engaged with Pharmac and there was nothing CFNZ could do - at this stage. Last month I met with Vertex's Country Manager, Eilis Quinn, who informed me that Vertex would soon be able to provide Pharmac with additional information about Kalydeco.
We also asked Pharmac about the Tobi Podhaler which is a great disposable product for inhaling tobramycin available in the UK and Australia. Manufacturers Novartis has suggested CFNZ submit a patient submission after Pharmac rejected funding for it in 2013, and at the meeting last week Pharmac agreed to consider it. One Kiwi who has just returned from the UK told CFNZ that Tobi Pod takes just 1 minute to use instead of 10-15mins on the traditional nebuliser.
All in all it was a positive meeting and it's good to know CFNZ has Pharmac's support with sorting out some of the issues related to equipment.
I am also pleased to provide an update on PORT CF, the NZ CF data registry. CF Nurse Specialist Jan Tate, who has been engaged by CFNZ, has worked tirelessly to ensure that the data for 2016 will be the best data collected to date. We are extremely grateful to everyone who has consented to have their data collected and to the huge effort from DHBs to input data. We hope to have this report finalised by the end of the year.
Next month CFNZ will call for expressions of interest from clinicians to be part of the Clinical Advisory Panel (CAP). The CFNZ Board believes that both the re-establishment of the CAP and having robust data via PORT CF will add strength, direction and influence to CFNZ’s ability to lobby effectively.
By Chief Executive Jane Bollard 

Awareness Week is Literally Breath Taking!

Just over two weeks to go until Cystic Fibrosis Awareness Week (14-20 August) and it's all hands on deck at the office where we are supplying chocolate fish, coin trail super stars, posters and other fundraising resources for the wonderful people around NZ who have volunteered to fundraise for CF. We have new posters, flyers, donor cards, lanyards and stickers designed by a professional graphic designer with the tagline It's Literally Breath Taking. Contact Laura to request any of these resources, email: office@cfnz.org.nz.
Huge thanks to our major sponsors Choice Hotels for running their Take a Breather for CF fundraising week again this year where $2 from every night stayed at one of its NZ properties during Awareness Week will go to CFNZ. Visit www.choicehotels.co.nz to book a break and support CF at the same time.
Meanwhile, we always welcome new volunteers so contact CFNZ office@cfnz.org.nz or phone Freephone 0800 651 122 if you'd like to help with Awareness Week.

Terry's trek for Maddy

Terry Wilson is setting off on a personal pilgrimage to walk the Camino - an 800 kilometre journey across Spain ending at the cathedral at Santiago de Compostella. Two hundred thousand people walk the Road to Santiago every year but not everyone is doing it to help find a cure for CF. Terry is walking in memory of his late granddaughter Maddy, who lived with CF, and his Givealittle Page aims to raise $10,000 split between CFNZ and Cure Kids. Good luck Terry!

Raise a Calf for CF

The Raise a Calf for CF fundraiser has been so popular in Taranaki the Branch is doing it all again this year. The programme sees people rearing a bull calf to donate once it's been weaned. The ear tags are supplied by Allflex. The Branch raised $5000 from this fundraiser last year and the community are keen to help again this year. Email Branch Chair Nicola McCarthy nicola.mccarthy@fonterra.com for more information.

Hole-in-one at Golf Day

The Kia Large Cup Golf Tournament where CFNZ Otago was one of the nominated charities saw one player get a hole-in-one and win an SUV as reported in the Otago Daily Times. The impressive score means an extra $1000 dollars for the Otago Branch.
NZ Large Cup Golf has run 10 similar events and this was the first time a hole-in-one has been scored. The total amount raised for CF has not been confirmed as yet.

Photo Shoot for CFNZ

CFNZ was offered the chance for a free photo shoot for staff head shots by Auckland photographer Alex Henderson and they turned out really well. We will be using them for the new website that's under development and expected to be launched in the new year. Alex is a Professional Portrait Photographer providing portraits for family, business, fashion and beauty. He did a great job setting up a portable studio at the CFNZ Auckland Office. He's got a special offer for CFNZ until 31 December this year. Phone Alex on 022 170 49 78  or email: ahpstudio@icloud.com.

Australian Cystic Fibrosis Conference Live Online

For the first time, the Australian Cystic Fibrosis Conference will be live streamed for both some of the lay and medical sessions during 5-8 August. There will be a mix of streaming, recordings, and in a world first - live Q&A's with international speakers. Read the Consumer Connect document for more information about how to access the live sessions. Numbers are limited and people with CF will take priority.

Body Box for Lung Function Tests in Christchurch

Tylah-Ray Davidson stole the show when Christchurch Hospital unveiled it's new body box machine for lung function tests paid for by Countdown Supermarkets.
Tylah-Ray appeared on One News to demonstrate the new machine and his parents Wayne and Kim were interview as well. The episode is available at TVNZ on demand if you log in - clip starts 24 minutes in. He was also interviewed by the Christchurch Press  along with hospital staff.

Mineral Pools

Last week CFNZ had an inquiry from an Australian family who wanted to know if it was okay to take their with daughter with CF to the mineral pools in Rotorua. We asked Jan Tate for her advice and this is her response:
"It is recommended that people with CF do not swim in warm mineral pools such as those in Rotorua. Pools such as these have fine mist droplets of moisture in the atmosphere and these droplets could potentially harbour bacteria that could be harmful to people with CF. As well as the mist above the water line, the warm water will often sit outside of the pools; on pathways and in the drains. With bacteria, known to grow in warm damp places, these areas are a perfect environment for any bacteria to grow and thrive. If a pool is well chlorinated, the water should be free from bacteria but the outside of the pool in the surrounding damp areas should be avoided. This recommendation applies to  hot / warm / mineral / spa pools. The ideal place to swim is in the sea where the salty water has proved to beneficial to people with CF." - Jan Tate, Starship CF Nurse Specialist
 

HDC Seeks Consumer Advisors

The Health and Disability Commissioner (HDC) is looking for applicants for his Consumer Advisory Group (CAG). The successful applicant will have a chronic health condition and have experience in accessing a range of services in the health system. They also require experience of working with issues at a national level, the ability to think of different perspectives and have links within the health and/or disability communities, Application forms can be downloaded from the Health and Disability website.

Panui delivery issues

We are finding that the Panui has started to appear in people's junk mail rather than their inbox. If this is the case you may need to fish it out of your junk mail and mark it as "not junk" and it should be fine after that.

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