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Run for Bella Powell! - Help Bella get her Cystic Fibrosis Non-Funded medication which costs $470k per year!


$5,558 donated
Given by 162 generous donors in around 4 months
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Help us raise money for Bella Powell's very expensive Cystic Fibrosis medication which is the one thing currently keeping her alive

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  Auckland

Our involvement:

Our names are Annabella and Clara Simmons.

We have both always wanted to run a half marathon but always been so nervous to do it.

Bella’s Powell's constant courage and her condition has made us realise how lucky we are for what we have in life and that we take the simple things in life (like walking and running) for granted.

Bellas story put our nervousness into perspective and we set a challenge for our selves by signing up for the Mount Maunganui Half Marathon. Our goal is to raise $5,000+ to go towards Bella's cystic fibrosis (CF) medication which is currently the only thing that is keeping her breathing and living. The half marathon is on the 28th of November.

Here's a bit about Bella:

Here is a video if you find it easier to watch instead of read:

https://www.newshub.co.nz/home/new-zealand/2020/08/givealittle-page-set-up-for-kiwi-teen-bella-powell-s-miracle-470k-cystic-fibrosis-trikafta-drug.html?fbclid=IwAR3nFuXT_WWnN7Op7opJiOp2RJRMVIEO5wHx4bx2_wPaQkzg9DjDeOGQpQ8

Seventeen-year-old Bella Powell lives with cystic fibrosis (CF). At 15 she was told she only had two years to live if her condition went untreated.

Cystic fibrosis affects the cells that produce mucus. They then plug up the tubes and passageways which puts massive amounts of pressure on the lungs, eventually wearing them out.

Since cystic fibrosis is destroying Bella's lungs, she needs a lung transplant. She was put on the lung transplant list, however, a new set of lungs have yet to come and the risk is high, the lungs might not work - she could die on the waiting list or on the operating table.

The TRIKAFTA medication she recently started taking cleared in six hours after taking her first pill and is the only thing keeping her alive. Two weeks ago before she started taking them, she could barely walk. But now she says she feels great.

However, Trikafta costs $469,000 a year. It's owned by American company Vertex, which sets the price and it isn't subsidised by Government drug-buyer Pharmac.

She also only has a three-month supply.... which means 3 months to live.

As seen on the current debates between Jacinda and Judith, until this drug is funded in New Zealand Bellas family are having to pay $470k per year to keep her breathing. This is an unimaginable amount of money for anyone and is Bella's ONLY lifeline!

Please donate to keep Bella breathing and being able to do the things she loves

More links:

https://www.facebook.com/TheProjectNZ/videos/752021508673131/

https://www.newshub.co.nz/home/new-zealand/2020/08/trikafta-campaign-group-calling-on-government-to-fund-miracle-drug-for-cystic-fibrosis-sufferers.html?fbclid=IwAR0cP9t5Mz10448N7_wg_n5QUHFSqTLlmB1aVTFU-nH22t2mtYz9qowEokA

https://www.newshub.co.nz/home/new-zealand/2020/08/kiwi-teen-with-cystic-fibrosis-sees-miracle-results-with-new-drug-trikafta-but-it-costs-470k-a-year.html

https://www.facebook.com/TheAMShowNZ/videos/2670601139860612/?epa=SEARCH_BOX

Keep up to date with campaign progress and ways to help by joining the Access for Aotearoa - Campaign for precision medicines for Kiwis with CF advocacy group and by liking the Trikafta For Kiwis community page.

Annabella Simmons' involvement (page creator)

We will be running to raise money for Bella Powell's medication for Cystic Fibrosis (CF) Non -Funded medication which is the one thing keeping her alive and costs $470k per year


Latest donations

Philip
Philip 3 days ago
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Ayla 5 days ago
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Elodie 5 days ago
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Lucy 5 days ago
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Jessie
Jessie 5 days ago
Love your work!
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This page was created on 10 Aug 2020 and closes on 9 Aug 2021.
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