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New Zealanders Asked To Help Give A Brighter Future For Kiwis Living With Cystic Fibrosis

Monday, 3 May 2021, 1:48 pm
Cystic Fibrosis NZ is calling on the New Zealand public
to help “give a future” for Kiwis with cystic fibrosis
(CF) by supporting its annual appeal which runs from 1-31
May 2021.
Living with CF is tough, time-consuming, and
an emotional rollercoaster. It doesn t get easier for those
affected. Life-saving medications such as Trikafta are still
not funded in New Zealand, severely impacting both quality
and length of life. There is no cure, and only half of those
with CF reach 31 years of age.
The “give a future”
annual appeal calls on the New Zealand public to help change ....

New Zealand , New Zealanders , Jane Bollard , Citizen Community , Foundation For Public Interest Journalism , New Zealanders Asked To Help Give , Cystic Fibrosis New , Cystic Fibrosis , Scoop Citizen Community , In Depth Engaged Journalism , Scoop Foundation , Public Interest Journalism , Cystic Fibrosis New Zealand , புதியது ஜீலாந்து , ஜேன் பொல்லார்ட் , குடிமகன் சமூக , அடித்தளம் க்கு பொது ஆர்வம் பத்திரிகை , சிஸ்டிக் ஃபைப்ரோஸிஸ் புதியது , சிஸ்டிக் ஃபைப்ரோஸிஸ் , ஸ்கூப் குடிமகன் சமூக , இல் ஆழம் நிச்சயதார்த்தம் பத்திரிகை , ஸ்கூப் அடித்தளம் , பொது ஆர்வம் பத்திரிகை , சிஸ்டிக் ஃபைப்ரோஸிஸ் புதியது ஜீலாந்து ,

Taranaki man walking the 15,000km of New Zealand coastline for late brother, dying mother

“One of her bucket list things is to see me start this,” the father of two said.
When Shane was nine, Daniel died of cystic fibrosis, an inherited disorder that damages the lungs and digestive system.
“I feel like I had to live the life of two people,” Shane said.
Supplied
Shane s plan to walk all over New Zealand came from conversations with Daniel, pictured with dog Toby, as a youngster.
Daniel was diagnosed just after birth.
“They didn’t know too much about it, really,” Shane said. “Daniel was alive for six years but probably spent four of that in hospital.” ....

Cape Reinga , New Zealand General , New Zealand , New Plymouth , Daniel Kidby , Cystic Fibrosis New Zealand , Far North , புதியது ஜீலாந்து ஜநரல் , புதியது ஜீலாந்து , புதியது ப்லிமத் , சிஸ்டிக் ஃபைப்ரோஸிஸ் புதியது ஜீலாந்து , இதுவரை வடக்கு ,

Tauranga boy pleads for Trikafta drug to ease cystic fibrosis

Tauranga boy pleads for Trikafta drug to ease cystic fibrosis
19 Feb, 2021 10:00 PM
7 minutes to read
Harry Oxenham has cystic fibrosis and hopes a treatment drug will change his life. Photo / George Novak
Harry Oxenham has cystic fibrosis and hopes a treatment drug will change his life. Photo / George Novak
It s a little like the sound of a dishwasher or the
washing machine.
The sound is relentless - constantly filling the silence
of thought as Harry s parents, Aly, Dan and I talk.
Ironically, relentless is how Aly describes the half-hour treatment regime that sees Harry using three different mouthpieces, to achieve three different results for the sticky mucus on his lungs, otherwise known as cystic fibrosis. ....

New Zealand , New Zealanders , Jane Bollard , Harry Oxenham , Rotorua Leah Rumney , Lisa Williams , Leah Rumney , Rotorua Daily Post Weekend , Fibrosis New Zealand , Cystic Fibrosis New Zealand , Trikafta For Kiwis , Harry S , புதியது ஜீலாந்து , ஜேன் பொல்லார்ட் , லிசா வில்லியம்ஸ் , லியா ரம்னி , ஃபைப்ரோஸிஸ் புதியது ஜீலாந்து , சிஸ்டிக் ஃபைப்ரோஸிஸ் புதியது ஜீலாந்து , ஹாரி கள் ,

Rotorua 11-year-old begs for Trikafta to be free of cystic fibrosis

Rotorua 11-year-old begs for Trikafta to be free of cystic fibrosis
12 Feb, 2021 05:00 PM
6 minutes to read
Leah Rumney who wants Trikafta for Leah s cystic fibrosis
Leah Rumney s Christmas wish was to be free of cystic fibrosis.
But it s a wish which broke her mother s heart because she knew she couldn t make it happen for her 11-year-old.
Not without Trikafta -
a breakthrough treatment Cystic Fibrosis NZ says is widely heralded as having the potential to turn cystic fibrosis from a life-threatening condition to a manageable condition.
But it is not currently registered and funded in New Zealand.
And at more than $470,000 a year the drug is simply not attainable to many with cystic fibrosis, including the Rotorua girl. ....

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