Cups for a cure: A Newtown mum’s admirable mission

In times of uncertainty, pedalling forward is less taxing than facing what’s really going on.

Twenty years ago, Leah Alstin sought refuge in ignoring her Friedreich’s ataxia diagnosis – a rare neuromuscular disorder that causes gradual loss of co-ordination.

The then 17-year-old from Ballarat knew her life would be different to how she imagined, but this didn’t mean it couldn’t be everything she had hoped for.

“I was just about to start studying primary teaching at uni in Geelong. Mum told me about the diagnosis. I cried and thought ‘I’ll be right’. To be honest, I ignored it and kept going,” she said.

“It’s (Friedreich’s ataxia) progressive, there isn’t really a known rate of progression. You might progress really fast, but in my case I’ve been quite lucky as it’s progressing slowly.

“I can still speak quite legibly but that’s something you lose – the ability to speak. I’m still walking and using a frame all the time. That happened six years ago, and I started to rely on a walking frame full time.”

Leah, who taught at Wallington Primary School before the birth of her two children (Milla, 10, and Chad, 8), hid her condition for fear of not what others would say, but how they would treat her.

She’s never wanted people to feel sorry for her, or to think she’s less able to do things.

“I was scared of what was going to happen in the future. I didn’t want people to think that I’m not capable of things. I was scared to tell employers because I was worried they wouldn’t value me anymore,” she said.

“Twenty years ago I could hide it, whereas now I can’t hide it.”

But Leah’s optimistic attitude and willingness to help others with health hurdles has seen her establish a 2,000-strong following on her Instagram @being_leah where she shares snippets of her day to day life.

In December, she launched a reusable cup label Ruby Seven (named after her children’s middle names) which sees $5 from every sale forwarded to the Friedreich’s Ataxia Research Alliance (FARA).

A lover of coffee on the go, Leah wanted the cups to be user-friendly, particularly for people with fine motor skill difficulties.

They feature a non-spill lid, are smash proof and fitted with double wall stainless steel.

“I wanted to create something that was an ongoing fundraiser for Friedreich’s ataxia.

“We have lots of functions, gala balls, bike rides and walks but they’re a big function and then they’re done. I wanted something that raises money every single day.

“I like getting coffee in a takeaway cup, but they always fill it to the top. I wanted to make a cup that doesn’t spill.

“I Googled how to source a product from China, sent lots of emails back and forth, got a sample sent over of a cup I liked, tried that, made a few little changes to make it my own and got them made.”

Since launching online three months ago, the Newtown mum has raised close to $7,000.

Each cup comes with a letter from Leah explaining how much money is being donated from the sale and where it’s going.

She is also part of a medical trial for the drug omaveloxolone, which is believed to slow down the progression of Friedreich’s ataxia.

“I’m really hoping it’s available to everyone this year, that’s my goal.”

Leah hopes her lust for life and journey to self-acceptance will inspire others to see the beauty in the smallest of moments, even when it feels as though there’s little to salvage.

“If you’re not comfortable with yourself, no one else is going to be comfortable around you. “I’ve learnt that in 20 years of having the condition, life’s so much better now that I admit to it.

“My kids are the reason why I keep going because if it wasn’t for them and Joel (Leah’s husband), I probably wouldn’t be as motivated. They need their mum for as long as possible.”

To help Leah on her journey to finding a cure for Friedreich’s ataxia, head to rubyseven.com.au or follow @ruby_seven_au.