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Home / Hawkes Bay Today

Woman's bid for stem cell treatment in Israel

Hawkes Bay Today
9 Nov, 2017 08:30 PM5 mins to read

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Janet Luke is fundraising to go to Israel for stem cell treatment after being diagnosed with Motor Neurone Disease.

Janet Luke is fundraising to go to Israel for stem cell treatment after being diagnosed with Motor Neurone Disease.

For 47-year-old, Havelock North wife and mum of three Janet Luke, giving up is simply not an option.

In June, she was diagnosed with Motor Neurone Disease - a rare group of diseases that cause the death of the nerve cells that control the muscles which enable people to function - and she has been fighting for her life ever since.

She is not prepared to "sit down" and watch the incurable disease take her life.

In the months that followed, her life and those around her came to a standstill while they gathered what strength they had to take on the prognosis of an average life expectancy of two to five years.

Now they are firmly focused on funding a trip to Israel for what they believe is "ground-breaking" stem cell research and will hopefully "slow the progression" of the disease, giving her much needed time with her young family.

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In Israel, if someone has a terminal illness, they are allowed to apply to be considered for the treatment before the stage 3 clinical trial is completed and FDA-approved.

Close friend, Griselda Mason's sole wish is to help Janet achieve this wish to extend her life.

"I am proud to call her my friend and I want to help her and her family in any way that I can. The diagnosis has affected her and her family deeply, to a point that we will never know as we are not in her situation."

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Despite fundraising for the past month and a half through brownie sales at her business; The Hastings Chiropractic Clinic and a givealittle page set up in Janet's name - it has raised nowhere near close to the expected more than $100,000 needed for the treatment, let alone for the travel costs.

"We can't believe the community support. There has been a great outpouring of generosity and we are gobsmacked at the response from the community."

There efforts have raised about $1600 through the sales and $50 on the givealittle page.

Run by BrainStorm Cell Therapeutics, the treatment called NurOwn has not yet had approval from the FDA and they are currently planning to conduct stage 3 of the trial in the US.

Speaking about the stage 2a trial results of NurOwn, conducted in Israel, BrainStorm chief executive Tony Fiorino said they "observed not just a highly meaningful slowing of ALS progression on two different parameters ... but subjects with prolonged stabilisation and even improvements in function, and this was achieved with just a single dose of NurOwn."

It is reports like these that have given Janet and the people around her hope that this treatment is the most promising for Motor Neurone Disease sufferers.

"It is one of the most recent developments in stem cell treatment for Motor Neurone Disease. It still has got a long way to go until it is approved by the FDA," Mrs Mason said.

"She realises that she will not live forever. Her wish is to slow the progression of the disease. She has young kids and a wonderful and supportive husband and will do anything to be there for her family for as long as possible. We hope that it will give her more time."

Janet's three sons are aged 15, 12 and 10.

There are not many people that don't know Janet, Mrs Mason noted, as she is a prominent figure in sustainable living.

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She has a business, Green Urban Living and has written a number of books on sustainable living.

Years ago, she began the Save Our Bees Charitable Trust and grows organic produce on her property.

Mrs Mason met Janet nine years ago when she immigrated from the UK.

"She was one of the first people I met. We lived on the same street. She was out in the garden and it so happened that her eldest son was in the same class at school as my son. They have been a great support to our family over the years and have welcomed us to New Zealand."

When asked what her friend meant to her, she was lost for words.

The "private" woman is said to be immersing herself in her bees and "is growing and then selling top bar hive Nucs."

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"I am not the only person who is supporting her in Hawke's Bay. She has a lovely circle of friends doing their bit for her. Her book club have been giving her meals. She has a good support crew around her for her day-to-day trials."

Currently, there are more than 300 people living with MND in New Zealand.

President of the Motor Neurone Disease Association of New Zealand, Beth Watson said stem cell research was not currently available in the country.

She said it was an area of interest for researchers.

The 2017 Walks 2 D'Feet MND will be held in 16 towns and cities all over New Zealand. This year's walks are being held on Sundayat the Napier RSA, Vautier Street. Half of the funds raised will go towards supporting MND research in New Zealand.​

Mrs Mason expressed that "even if the Israel trial does not come off, or she is not accepted, the money will go to Janet and her family to make memories that they can cherish forever." ​

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To donate to Janet Luke's Givealittle page, visit: https://givealittle.co.nz/cause/janetsjourney

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