around the issue of travel for Fieldworkers and also a comprehensive and definitivecross infection policy You will see from this report that we really want to engage and involve our wholecommunity not just in the strategic process but specific projects We know there is awealth of people skills and energy in our CF community Please donrsquot hesitate as abranch or individual to get in touch if you think you can help - Michele Wilson CFNZ Board Member
Great Shot RyleeGood to see people taking advantage of PARIs offerto mark its 50th anniversary by donating 10 Euro(NZ$17) to CFNZ for anyone who completesa personal challenge wearing a PARI shirt and postsa photo on the PARI BOY 50th Facebook PageCongratulations to Rylee (12) of Hawkes Bay forbeing the first New Zealander to appear on PARIsFacebook Page wearing a PARI t-shirt with this greataction shot of her playing shot put Order your t-shirts through the PARI website - limittwo per order
New Clinical AdvisoryPanel AnnouncedCFNZ is pleased to announce thenew Clinical Advisory Panel set upto provide expert advice to CFNZThe Panel includes AssociateProfessor Cass Byrnes (Chair)Adult Physician Dr Mark OCarrollCF Nurse Specialists Jan Tate andCath Lamont PhysiotherapistsRebecca Scoones and TrishGoulter Dietitian Tory CrowderCFNZ Chair Jane Drumm and CFNZChief Executive Jane Bollard Itshoped the new Panel willmeet soon We will keep youinformed with any updates
Tommos Trek for MadddyMark Thomson is walking theCamino to join his father-in-law TerryWilson as he walks the Camino for asecond time followed by a film crewthatrsquos profiling Kiwis who haveembarked on the spiritual journey towalk 800 kilometres across Spain tothe cathedral of Santiago deCompostela Mark is also walking inmemory of his step-daughter MaddyStuart who passed away with CF in2016 He has kindly set up a
CFNZ Bowled OverHuge thanks to the BirkenheadBowling Club and RotaryBirkenhead which raised an incredible $8000 for CFNZ followingtheir bowling day for CF and to helpsupport one of their members -Curtis Ennor of the CF communityJane is pictured here with Curtis(left) and representatives from theBowling Club and Rotary at thecheque presentation this month This was the highest total raised forany charity by the Club which iskeen to support us again
Last Chance for CFAchievers AwardsEntries for the CF AchieversAwards close on 1 April TheAwards cover four categories -Sport Education the Arts andLeadership and are used tocelebrate the impressiveachievements of people with CFLate applications can be emailed toAwards Committee Chair DenisCurrie in PDF formatdeniscurryxtraconz and must bereceived by this Sunday Applicationform available on the website
Entertainment Books Back Entertainment Books are available for
Auckland Waikato and Bay of Plenty
Wellington Canterbury and Nelson and
Otago regions this year There are loads
Givealittle fundraising page withfunds going to CFNZ and Cure Kids
CF at School Guide The CF at School Guide for Parentsis the next new publication almostready to roll We are still looking foradvice from parents about how theymanage CF at school for theirchildren Wed love to hear any tipsand insights that could be helpful forother parents with school agechildren Contact Laura atofficecfnzorgnz Meanwhile theres been a delay onthe release of the NewDiagnosis Guide because we areseeking feedback from thePaediatric Societys Clinical Networkfor Cystic Fibrosis We do welcomeparents to review it once its ready
Orkambi Now UnfundedPrescription Medicine in NZ The medication lumacaftor has now been
listed as a prescription medicine in New
Zealand with the drug lisencing authority
Medsafe This means that people who
would like to pay for the drug Orkabmi (a
combination of the drug compounds
lumacaftor and ivacaftor) themselves can
import it from an overseas supplier
provided they have a doctorrsquos prescription
Meanwhile at this stage Vertex says it has
no plans to submit Orkambi for
government funding
New Deadline forBreath4CFApplications for Breath4CF grantsnow need to be in by 15 June eachyear to allow processing before 30June which is the end of the
of discounts in the Books along with the
chance to support CF Entertainment
Books cost between $65-$70 Most are
available early April apart from Canterbury
which is available early May You can pre-
order the Books
Auckland
Waikato amp BOP
Wellington amp Manawatu
Canterbury amp Nelson
Otago
Flu shot reminderThis years flu vaccine has beenupdated to include a new strain tocombat the Aussie flu which hashit hard in the UK and Europe Pharmac is funding a newquadrivalent seasonal flu vaccineto be available by April thatsdesigned to protect against fourstrains of influenza including twoA and two B strains includingthe life-threatening H3N2strain which overloaded thehospital system in the UK and USAwhere hospitalisation rates wereworse than during the swine fluepidemic Flu shots are free for NewZealanders with CF
Te Whero Family on Maori TVBig thanks to the Te Whero whānau who
ran in Aucklandrsquos Round the Bays to
support CF and were featured on Maori
Television this month
financial year The Breath4CFactivity grant is available for allpeople with CF ($300 for adults and$150 for under 6s each financialyear) The aim of the grant is toremove cost barriers for physicalexercise which improves lung healthfor people with CF Application formavailable here Note this form willbe available to fill out electronicallyon the new website which isexpected to go live next month
Good Links
Australia to increase access togenetic testing7 tips to prevent refluxaspirationMental health matters for lungtransplant - personal story USAustralias new Bachelor starhas a brother amp sister with CFThe difference betweenSymdeko and KalydecoIreland Dancing with the Starsjudge is interviewed abouthaving CF
Panui - sign up here
Quote of the Month CFNZ is doing such great things for all the kids and Im one of the
lucky ones I havent had nearly as many hospital admissions as some people with CF
but they still keep fighting
- Curtis Ennor - speaking at the Bowling Presentation in Birkenhead Ak
Copyright copy 2018 Cystic Fibrosis New Zealand All rights reserved
Want to change how you receive these emails
You can update your preferences or unsubscribe from this list