Gift basket. Source: pixabay

Gift basket. Source: pixabay

Creston businesses step up to help raise funds to cure rare genetic disorder

All proceeds will go towards the development of a cure and or treatment for a rare genetic disorder called hereditary spastic paraplegia-50 (SPG50)

More than 10 businesses in town have donated items and certificates to a gift basket that will be raffled off in December, with all proceeds going towards the development of a cure and or treatment for a rare genetic disorder called hereditary spastic paraplegia-50 (SPG50).

The gift basket idea was launched by Creston resident Nicky Germann, who was inspired to raise and donate funds to help with the development of a cure after hearing the story of Michael Pirovolakis, a toddler in Toronto who was diagnosed with SPG50 when he was 15-months-old back in 2019.

“He’s the only one in Canada with it. But there is a group of doctors from around the world who have a treatment that can slow or stop this degenerative disease. Really, it’s down to money and prayer,” said Germann, who is the owner of Rustic Roots Day Spa.

No more than 60 people in the world have been diagnosed with SPG50, which is a genetic disorder that prevents the body from producing a certain protein that’s essential for development.

The majority of children diagnosed with SPG50 experience a variety of symptoms such as a loss in muscle tone increased spasticity and paralysis in the lower limbs, delayed motor development and intellectual disability.

The disorder can lead to extreme cases of immobility, where spasticity may progress to partial or total loss of use of all four limbs and torso.

Curespg50.org was created by Pirovolakis’s family, where people are able to donate to help with the development of a cure. Over $1.5 million has been raised, with an end goal of $3.9 million.

“They’re asking the world for money to help not only their son but other people suffering from the disease,” said Germann. “I thought to myself, ‘If one of my babies could be healed because of money, you’d do anything’.”

Since the beginning of October, Germann said she’s been visiting local shops to raise awareness about the disorder and gather donations.

The gift basket that she has put together includes gift certificates and vouchers for local businesses such as Frisky Whisky, Retro Cafe, Morris Flowers, Kokanee Ford and more.

“This basket is going to be worth quite a lot of money. It’s already around $500 and I’m guessing there’ll be $1,000 worth of stuff in there,” she said.

The raffle would take place sometime before Christmas, and tickets will be available at Vance BrandSource Home Furnishings sometime in November.

Germann listed raffle ticket prices at $20 for one, $30 for two and $50 for three.

“I would love to raise $4,000, even if it seems extreme,” she said. “I just want the family to know that the town of Creston is thinking about them.”

Do you have something to add to this story, or something else we should report on? Email: aaron.hemens@crestonvalleyadvance.ca


@aaron_hemens
aaron.hemens@crestonvalleyadvance.ca

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