Alison’s Ability is a Family Fund set up by Alison Laird after she was diagnosed with GNE Myopathy, 3 years ago at the age of 39. It is a rare muscle-wasting condition that only affects a handful of people in the UK.

Prior to this diagnosis Alison had a career as a fitness instructor and could out do most guys in the gym lifting weights and running – now Alison struggles to get upstairs, wears a leg brace and requires the use of a walking aid on any lengthy walk.

Despite these physical and mental struggles Alison’s motto is “my ability is stronger than my disability” and is looking forward to working with us helping to raise awareness and funds for research into GNE Myopathy.

Alison says,

All my life I have been very active and even had a career in the fitness industry which I loved. Gradually I began noticing some unusual physical symptoms and in my late twenties I was occasionally falling and tripping, which I dismissed as clumsiness. In my early thirties I noticed my feet did not have the range of movement I once had yet I knew I was in good physical condition so I was baffled by these symptoms.

I started lifting weights and I loved how this sculpted my muscles but I started noticing my weights had to be lighter as my strength was decreasing. I went to my GP for advice but my doctor was as flummoxed as I was. After a few years of worsening symptoms; foot drop in both feet and a walk that looked abnormal, I was referred to a physiotherapist. Physio sent me straight back to my GP with a referral to a neurologist. I was referred on again but this time to a professor in Newcastle. I had genetic testing which confirmed the news that I had a rare muscle wasting condition called GNE Myopathy.

I was relieved to know what was wrong with me but at the same time, I was devastated because I knew I’d have to give up my career and my life would change. I can’t run, I walk slower (‘with a swagger’ as my son puts it), I wear leg braces for my foot drop (gone are my days of stilettos), I can’t climb steps well and I use a walker. My upper body strength is also weak so I can’t lift my gorgeous grandson in my arms. My hope is to stay as independent as possible in order to allow my kids the freedom to enjoy their lives without worrying about me.

I can’t just sit back and wait for a treatment or cure and nor do I want other patients to go through everything I have so I am asking for your help. Alison’s Ability are raising awareness and funds for Muscular Dystrophy UK. It is so important for people with Muscular Dystrophy conditions to be able to lead a normal life and I want to help make this happen.

How you can help

Setting up a family fund, like Alison’s Ability is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our Family Funds.

In this section: Get involved

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