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Advocate for life

Allyson Lock’s dedication to supporting the wider community of patients with rare disorders made her a member of the New Zealand Order of Merit. PHOTO/ELI HILL

Allyson Sarah Lock – Member of the New Zealand Order of Merit for services to people with rare health disorders

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Despite her tireless advocacy for people with Pompe, Masterton woman Allyson Lock said she was surprised to be made a member of the New Zealand Order of Merit.

“I thought that was only for special people,” said Lock, who was nominated for her services to people with rare disorders.

In 2010, Lock was diagnosed with the fatal Pompe disease which weakens people’s core muscles making it difficult to breathe.

It also affects the legs.

When Lock found out that Myzome, which she says is the only drug available to combat the effects of Pompe, wasn’t funded by the government she made a promise to herself that she wouldn’t give in until the treatment was funded by Pharmac.

Lock is the president of the New Zealand Pompe Network, a charity which she founded and one which she says can often be like working a full-time job.

Her work involves advocating for enzyme replacement therapy, staging an awareness campaign during the 2017 New Zealand General Election.

She has also sat on the board of Amicus Therapeutics for five years as a patient advisory member.

In 2018, she helped set up a patient support organisation for sufferers of gaucher disease in Australia, using her expertise from setting up the New Zealand Pompe Network.

Lock said finding out who’d nominated her for the award made it even more special.

“I was nominated by a dear friend who passed away two months ago.

“He would’ve known that I had been chosen before he passed so I’m glad he got to know that.

“There were also two references, my doctor in Florida and a friend in Canada who is head of the Canadian Association of Pompe.

“It’s special that those three were involved in setting it up.

“I told my son about this, he said bet in a million years you never thought you’d get it, and he’s right I never did.”

Even so, Lock, who is always fighting for those with Pompe, said she’d trade it all to have the drug she needs to stay alive funded by the government.

“I’d like to extend an invitation to the Prime Minister from me.

“Would she swap my honour for Myzome to be funded?

“That’s a serious offer.”

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