Archive: 2020
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Covid-19 ; Breaking News - Hopeful New Treatment for PID patients - Developed by Kiwi Scientists
June 29, 2020
A new drug developed in NZ has been successfully tested and shown to be effective against SARS-CoV-2 in the laboratory; an important step before commencing human clinical trials.
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Beware Yellow 2020
June 22, 2020
28th June is Beware Yellow Day One again we are on a mission to promoting the early signs of paediatric liver disease. Did you know that the Foundation also prints and sends out free resources to medical centres, Plunket nurses and Midwives across New Zealand and ...
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Fair for Rare ; Make your Voice count
June 19, 2020
“No country can claim to have achieved universal healthcare if it has not adequately and equitably met the needs of those with rare diseases.” Helen Clark, United NationsFair for Rare is a call for the New Zealand government to take rare diseases seriously to ensure ...
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Positive Parenting in Uncertain Times. Part 16;Rebalancing
June 18, 2020
Rebalancing Post COVID-19 Whilst the rest of the world continues to ‘battle’ this virus, remain in lockdown and continue to hear ‘new case’, ‘death’ and ‘recovery’ figures. New Zealand has moved to level one. Social distancing becomes a distant memory, small gatherings can now become ...
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Positive Parenting in Uncertain Times. Part 15;Adjusting to loss
June 16, 2020
Adjusting to Loss - Jobs/financial stress One of the largest ‘losses’ throughout this time of COVID 19 will be job losses, adjustment in hours of work, reduced pay/income and pressures that these all cause. I would imagine from time to time if you have had ...
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Positive Parenting in Uncertain Times. Part 14; Is it okay to still be scared
June 16, 2020
Is it okay to still be scared? You are possibly wondering, is it ‘normal’ and Okay to still be scared? Yes, it is, it’s fine. Just remember to keep talking about your fears, give your children time to continue talking about their fears. Any worries ...
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World Blood Donor Day 2020
June 13, 2020
IDFNZ is proud to join the New Zealand Blood Service to give thanks to all of our amazing blood and plasma donors.Harry McPhail says it all on behalf of IDFNZ members from all over New Zealand !https://vimeo.com/341464460https://www.nzblood.co.nz/give-blood/world-blood-donor-day/ On World Blood Donor Day (WBDD), we want to say ...
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Post -Covid life ; Simple Precautions to Keep Safe
June 12, 2020
Simple Precautions to Keep Safe Some of the simplest measures are the most effective in battling this virus so we take this opportunity to remind families about some of the basics, and point you towards some fun resources that might be helpful to reinforce these ...
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Positive Parenting in Uncertain Times. Part 13 ; Back to Routine
June 9, 2020
Back to a routine Routines can be challenging after spending such a long time without one in lock down, not having to drive anywhere, no school pack lunches to make, no thoughts of pre-planning dinners, no after school activities or Saturday sports. Getting use to ...
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Covid -19 Bubbles Amy's Lockdown
June 3, 2020
Amy is well known to you as the IDFNZ office administrator.Living with her 3 year old son Connor - their weekly routine of work and day care suddenly changed with the government lockdown. For me, entering level 4 was a very surreal feeling. As I picked Connor ...
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Covid -19 Bubbles; Keira- Level 2 Birthday
June 1, 2020
Happy Queen's Birthday Everyone! Recently it was my birthday on the 23rd of May - it was close to being a birthday during lockdown but it wasn’t yeah!! I didn’t have a party with my friends instead all my grandparents came up on my birthday ...
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Covid -19 Bubbles: Coping with Covid-19 Stress and Anxiety
May 29, 2020
Coping with Covid-19 stress and anxiety – simple strategies that can improve your wellbeing For those of you that were not able to join us for the PID patient forum last week – here are some of the great tips to cope with Covid-19 lockdown stress ...
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Positive Parenting in Uncertain Times. Part 11; Don't get complacent
May 29, 2020
Don’t get complacent As a country New Zealand is doing a great job regarding keeping the numbers down in relation to COVID 19, we have moved from Alert level 4 down to level 2 in a relatively short space in time and now we can ...
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Positive Parenting in Uncertain Times. Part 10; Covid -19 Grief The 'New Norm'
May 28, 2020
Grief – In relation to Covid 19 – The ‘New Norm’Grief doesn’t just occur in relation to when someone dies. Grief can occur during ‘change’. Often grief can appear worse when those changes are still visual, when you know that person is there, but you can’t ...
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Covid -19 Bubbles The Gray Family
May 26, 2020
The Gray Family BubbleVirginia is 8 years old and lives with her Parents and sisters Alabama aged 15 , Georgia aged 13, and brother Elvis aged 3 . The Gray family bubble was a full one and was a busy place to be for much ...
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Positive Parenting in Uncertain Times. Part 9; Resilience
May 26, 2020
Your children will be hearing the word ‘resilience’ a lot. .....'You have been so resilient during this time'. ......'Lock down has supported us to find better ways to become resilient'. ......'This is a time to become resilient'. But what does that word mean to your ...
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Covid-19 ; Patient Briefing Event- Hopeful New Treatment for PID patients -
May 25, 2020
Join Us on Zoom for a Patient Briefing by Associate Professor Rohan Ameratunga, who will update PID members on a hopeful new treatment for Covid-19 developed here in New Zealand. 7pm - 7.40pm Thursday 4th June Email to info@idfnz.org.nz to register for this Zoom event - details ...
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Covid -19 Bubbles; Keira - Back to School
May 25, 2020
Hi All This past week was my first week back to school like many students and it had its ups and downs. The week as a whole was pretty normal – work was set in similar format to home learning except we were in class, ...
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Positive Parenting in Uncertain Times. Part 8: PPE ;What’s that look like in the eyes of your child?
May 20, 2020
Personal Protective Equipment (PPE) – What’s that look like in the eyes of your child? For many week’s your children have been hearing those three letters PPE. What does it stand for? What does Personal Protective Equipment do? Why are the children seeing their ...
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Covid -19 Bubbles Pala Family
May 20, 2020
Bhavya ,aged 14 lives with sister Vani Ashi, aged 12 and parents Bhavisha and Mandeep.The family kindly shared with us how they have survived the Covid-19 lockdown.The Pala Family Bubble The Pala family have learned during their time in lockdown that despite the stress of ...
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Positive Parenting in Uncertain Times.Part 7: Bursting the Bubble
May 19, 2020
Bursting the Bubble Well, we are in Level 2 – we’ve all been told we can ‘burst our bubbles’. Step away from the protective shield that we have been in for over 8 weeks. It’s a bit like a ‘Marvel’ movie. The attack of Covid ...
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Covid -19 Bubbles Keira Part 3
May 18, 2020
We are now officially in Level 2 & majority of people are going back to school & work – plus shops are open. I am going back to school on Monday the 18th & I’m not happy about it. I have gotten used to staying ...
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The Tolu Family Bubble
May 18, 2020
The Tolu Family Bubble17 month old Zani lives with her parents Malia and Sam and her five older brother and sisters Siolaa,Ailini,Vaha,Dean and Moala.Born with DiGeorge syndrome, young Zani has undergone both heart surgery and a Bone marrow transplant , spent many months in hospital, and ...
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Positive Parenting in Uncertain Times.Part 6 : Those Mood Changes
May 15, 2020
Those mood changes Cabin Fever has set in now what about those mood changes? How do you support your child or young person whose mood has changed, they are feeling ‘down, depressed, sad, mah’ Children and young people are adapting to home schooling, you are ...
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Covid -19 Bubbles
May 13, 2020
The Seumanutafa Family BubbleSix year old Slade, sister Mia aged 4 and parents Adam and Maretta have adapted well to bubble -life. The family has found that their Lock down bubble was a wonderful place to spend time as a family. Not only were they ...
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Positive Parenting in Uncertain Times.Part 4: What is There To Worry About?
May 12, 2020
‘What is there to worry about’? For those living with a child whose immune system is immunosuppressed, waiting or recovering from transplants, I can only imagine what you and your child/ren are going through and feeling during Level 3 of lockdown. Those that have children ...
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Positive Parenting in Uncertain Times.Part 5 : Cabin Fever
May 12, 2020
Cabin Fever – are you feeling trapped? The past seven weeks it’s been a little bit like being on a cruise ship, (bear with me) you’ve had your cabin (your bedroom) you have had your ship (your house) you have had your deck to walk ...
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Covid -19 Bubbles Keira Part 2
May 11, 2020
Keira’s Bubble ; Part 2. Most of us have been stuck at home now for almost two months, but I must admit I have been out to a few places – don’t worry all essential & medical related! The start of the year has been ...
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Shannon Family Covid bubble life
May 11, 2020
The Shannon Family Bubble Like a lot of New Zealanders, Megan Shannon and her family’s lives were completely changed by the COVID-19 lockdown. As with all our vulnerable immune suppressed patient members they had to be extra careful and make sure they kept safe. In doing ...
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Covid -19 Bubbles Lara's experience
May 11, 2020
Hi, my name is Lara, I am thirteen and I was born with biliary atresia. I had my first transplant when I was seven months old and another where I was nine. I live with my mum, dad, brother (16), and my two cats Maddie ...
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Phillipa
May 8, 2020
Our family bubble during COVID-19 lockdown - Phillipa Whitney For our family of four it was a big shock moving so quickly from level 2 to level 4 lock down and figuring how we would cope with being immune compromised. We adjusted pretty quickly, I moved into ...
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Positive Parenting in Uncertain Times.Part 3 ‘When Worries turn to Anxiety’
May 7, 2020
It’s more than ‘just’ Butterflies in my Tummy ‘When Worries turn to Anxiety’ During Covid 19 and the Lockdown, level 2, level 3 and level 4 your children would have been worrying, maybe just a little, maybe a lot. Those worries may have felt like ...
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Michele
May 6, 2020
Hi Michele here from my solo bubble.At the beginning of lock down , putting COVID-19 aside for a nano second, I thought isolation would be a golden opportunity for perfect health. Ever the optimist, even the idealist,I truly wondered as I had for years about ...
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CIRCUS QUIRKUS 2020 Parts1,2 and 3 All Live now!
May 6, 2020
As members are aware the live performance of Circus Quirkus NZ 2020 had to be cancelled due to the unique situation we are all experiencing. This was so disappointing for all the families who have attended in the past. We are thrilled to announce that the ...
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Positive Parenting in Uncertain Times. Part 2 The Emotional Rollercoaster
May 5, 2020
‘The Roller Coaster of Emotions’By Debbie MillsYour children are on a roller coaster now – The roller coaster of emotions.As parents or caregivers, you have not chosen for your child/ren or yourselves to be on this ride. You haven’t queued and payed to get on ...
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Keira - Life in a Covid-19 bubble
May 4, 2020
Keira - Life in a Covid-19 bubble Hi, my name is Keira, I’m fourteen almost fifteen and in Year Ten. I have biliary atresia and had a liver transplant four years ago. I live with my Mum, Dad and brother and here's what we have been ...
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IDFNZ Zoom Meeting Part 2; June 6th – Chatting about Stress and Coping with Dr Brian Broom
May 1, 2020
Grab a cuppa and join us for an informal chat about whatever is on your mind. Whether you are a patient yourself coping with ill health or a parent with sick children, there are mental challenges caused by chronic illness that simply cannot be escaped; ...
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COVID Rare Disease Patient Survey
May 1, 2020
COVID-19 Survey – Please take 10 minutes to complete the Rare Barometer survey. This is an opportunity to make your voice heard. This survey is essential for the rare disease community. It will enable measurement of how the virus is affecting rare disease patients’ lives and enable communication of ...
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COVID-19 Patient Forum
May 1, 2020
COVID-19 and Primary Immunodeficiency Thursday 14th May, 6-8.30pm (NZ time) This is hosted by AusPIPS, PID patient group based in Australia. Most of the information will also apply to IDFNZ patients.This features talks by Professor Jo Douglass ( clinician), Associate Professor Menno van Zelm ( researcher), ...
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Positive Parenting in Uncertain Times. Part 1 CHANGE
April 30, 2020
Positive Parenting in Uncertain Times : Part 1 - CHANGE Parenting Support through COVID - 9 Parenting an anxious, immune compromised child through the stress of COVID-19 Lockdown can be very challenging.Help is now here with practical professional advice from Debbie Mills (play therapist / ...
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We can get through this together
April 14, 2020
Please Give Now Help our vulnerable, immune compromised children. Lockdown doesn’t pause the life-threatening medical conditions affecting our medically fragile, immune compromised and transplant children. COVID-19 is yet an additional threat facing these patients who have already been through so much, and who have such ...
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Positive Parenting in Uncertain Times. Part 12
April 6, 2020
The ‘New Norm’ – How’s it going? I’m not normally an anxious person, my three children are healthy, yet I found myself last week struggling with the ‘New Norm’. Suddenly the ‘families’ that were seen out biking and walking for exercise isn’t as obvious, people ...
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PI WEEK 2020
March 27, 2020
PI Week 2020 Changing the lives of Kiwis living with undiagnosed Primary Immune Deficiency (PID) Disorders. There are now 430 recognised types of PID; although considered “rare” in the population, they can be life threatening and cause chronic ill health for those affected. Thousands of Kiwis ...
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Meet Stella - the First Kiwi Baby diagnosed with SCID via New born testing in New Zealand
March 27, 2020
In 2018, IDFNZ Patient member Stella Oprwood became the first Kiwi baby to be diagnosed with severe combined immune deficiency through the newborn metabolic screening programme. As a result, Stella’s health condition was able to be carefully managed by doctors before she suffered serious infection; ...
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CORONAVIRUS COVID-19
Feb. 26, 2020
LATEST NEWS:New Zealand moves to Alert level 1 from 11.59pm October 7thVisit https://covid19.govt.nz/alert-system/alert-level-1/ for MOH information COVID – 19 Updates for IDFNZ Patient Members: IDFNZ and KIDS Foundation members - please don't feel you are alone even when you may be isolated at home; IDFNZ support services will continue ...
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IDFNZ Coping with Chronic Illness – Workshop Dr Brian Broom
Feb. 7, 2020
IDFNZ is proud to host : Coping with Chronic Illness – an Auckland Wellness Workshop lead by Dr Brian BroomEvent now closed off.On Saturday March 14th, 2020, 10.30am – 12.30.@The St Heliers Centre, 100 St Heliers Bay Rd, St Heliers, Auckland 1071“Let’s talk about the bits ...
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PI Awareness - Step out For IDFNZ Fun Run
Feb. 5, 2020
Register online now at https://www.webscorer.com/register?raceid=208786
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Hands up to support Rare Disease Day 2020
Jan. 31, 2020
Rare Disease Day 2020This year is a leap year and so it is appropriate we are celebrating Rare Disease Day on the rare date of 29th February. What is Rare? - Internationally a disease or disorder affecting less than 1 in 2000 people in the population ...
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IDFNZ PATIENT MEMBER FUNDRAISING
Jan. 23, 2020
Luke Cherry – Brave, Kind and Thoughtful It was very touching to be presented with a special gift for IDFNZ KIDS Foundation at the Christchurch Christmas event from 11-year Luke Cherry. Luke had been wanting to do something for the KIDS Foundation for quite some ...
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Team Hasbro - Amazing Christmas Gift to IDFNZ
Jan. 23, 2020
HASBRO DAY OF JOY 2019