{"id":30577,"date":"2020-03-05T00:00:33","date_gmt":"2020-03-04T14:00:33","guid":{"rendered":"https:\/\/timesnewsgroup.com.au\/geelongtimes\/?p=30577"},"modified":"2020-03-07T11:30:55","modified_gmt":"2020-03-07T01:30:55","slug":"cups-for-a-cure-a-newtown-mums-admirable-mission","status":"publish","type":"post","link":"https:\/\/timesnewsgroup.com.au\/geelongtimes\/living\/cups-for-a-cure-a-newtown-mums-admirable-mission\/","title":{"rendered":"Cups for a cure: A Newtown mum’s admirable mission"},"content":{"rendered":"

In times of uncertainty, pedalling forward is less taxing than facing what\u2019s really going on.<\/p>\n

Twenty years ago, Leah Alstin sought refuge in ignoring her Friedreich\u2019s ataxia diagnosis \u2013 a rare neuromuscular disorder that causes gradual loss of co-ordination.<\/p>\n

The then 17-year-old from Ballarat knew her life would be different to how she imagined, but this didn\u2019t mean it couldn\u2019t be everything she had hoped for.<\/p>\n

\u201cI was just about to start studying primary teaching at uni in Geelong. Mum told me about the diagnosis. I cried and thought \u2018I\u2019ll be right\u2019. To be honest, I ignored it and kept going,\u201d she said.<\/p>\n

\u201cIt\u2019s (Friedreich\u2019s ataxia) progressive, there isn\u2019t really a known rate of progression. You might progress really fast, but in my case I\u2019ve been quite lucky as it\u2019s progressing slowly.<\/p>\n

\u201cI can still speak quite legibly but that\u2019s something you lose \u2013 the ability to speak. I\u2019m 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.\u201d<\/p>\n

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.<\/p>\n

\"\"
Joel, Chad, 8, Leah, and Milla, 10.<\/figcaption><\/figure>\n

She\u2019s never wanted people to feel sorry for her, or to think she\u2019s less able to do things.<\/p>\n

\u201cI was scared of what was going to happen in the future. I didn\u2019t want people to think that I\u2019m not capable of things. I was scared to tell employers because I was worried they wouldn\u2019t value me anymore,\u201d she said.<\/p>\n

\u201cTwenty years ago I could hide it, whereas now I can\u2019t hide it.\u201d<\/p>\n

But Leah\u2019s optimistic attitude and willingness to help others with health hurdles has seen her establish a 2,000-strong following on her Instagram @being_leah<\/strong> where she shares snippets of her day to day life.<\/p>\n

In December, she launched a reusable cup label Ruby Seven (named after her children\u2019s middle names) which sees $5 from every sale forwarded to the Friedreich’s Ataxia Research Alliance (FARA).<\/p>\n

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

They feature a non-spill lid, are smash proof and fitted with double wall stainless steel.<\/p>\n

\u201cI wanted to create something that was an ongoing fundraiser for Friedreich\u2019s ataxia.<\/p>\n

\u201cWe have lots of functions, gala balls, bike rides and walks but they\u2019re a big function and then they\u2019re done. I wanted something that raises money every single day.<\/p>\n

\"\"
Ruby Seven keep cup.<\/figcaption><\/figure>\n

\u201cI like getting coffee in a takeaway cup, but they always fill it to the top. I wanted to make a cup that doesn\u2019t spill.<\/p>\n

\u201cI 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.\u201d<\/p>\n

Since launching online three months ago, the Newtown mum has raised close to $7,000.<\/p>\n

Each cup comes with a letter from Leah explaining how much money is being donated from the sale and where it\u2019s going.<\/p>\n

She is also part of a medical trial for the drug omaveloxolone, which is believed to slow down the progression of Friedreich\u2019s ataxia.<\/p>\n

\u201cI\u2019m really hoping it\u2019s available to everyone this year, that\u2019s my goal.\u201d<\/p>\n

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\u2019s little to salvage.<\/p>\n

\u201cIf you\u2019re not comfortable with yourself, no one else is going to be comfortable around you. \u201cI\u2019ve learnt that in 20 years of having the condition, life\u2019s so much better now that I admit to it.<\/p>\n

\u201cMy kids are the reason why I keep going because if it wasn\u2019t for them and Joel (Leah\u2019s husband), I probably wouldn\u2019t be as motivated. They need their mum for as long as possible.\u201d<\/p>\n

To help Leah on her journey to finding a cure for Friedreich\u2019s ataxia, head to rubyseven.com.au<\/a> or follow @ruby_seven_au<\/strong>.<\/p>\n","protected":false},"excerpt":{"rendered":"

In times of uncertainty, pedalling forward is less taxing than facing what\u2019s really going on. Twenty years ago, Leah Alstin sought refuge in ignoring her Friedreich\u2019s ataxia diagnosis \u2013 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 […]<\/p>\n

Read More…<\/a><\/p>\n","protected":false},"author":142,"featured_media":30578,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[18],"tags":[],"post_folder":[],"class_list":["post-30577","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-living"],"acf":[],"yoast_head":"\nCups for a cure: A Newtown mum's admirable mission - Geelong Times<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/timesnewsgroup.com.au\/geelongtimes\/living\/cups-for-a-cure-a-newtown-mums-admirable-mission\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Cups for a cure: A Newtown mum's admirable mission - Geelong Times\" \/>\n<meta property=\"og:description\" content=\"In times of uncertainty, pedalling forward is less taxing than facing what\u2019s really going on. Twenty years ago, Leah Alstin sought refuge in ignoring her Friedreich\u2019s ataxia diagnosis \u2013 a rare neuromuscular disorder that causes gradual loss of co-ordination. 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