Living with SMA – Fleur Perry

Twenty-five-year-old student, Fleur Perry, has spinal muscular atrophy, type 2 (SMA). She was diagnosed with the condition when she was a toddler. When Fleur isn’t studying astronomy, she is busy researching and writing about disability rights issues and supporting people through her voluntary role as an Advocacy Ambassador for Muscular Dystrophy UK.

Fleur is a student with the Open University (OU), studying towards a BSc Natural Sciences focusing primarily on Astronomy.

In her role as an Advocacy Ambassador, Fleur helps people of all ages in the South West living with muscle-wasting conditions to get the care, support or equipment they need.

Last year, Fleur was named Trailblazer of the Year at Muscular Dystrophy UK’s President’s Awards for her work with the charity’s 600-strong group of young disabled campaigners. On top of this, she also finds time to write on disability issues for blogs and websites.

I’ve always been aware of Muscular Dystrophy UK, and some of my friends have been involved with the charity for a long time. Over the past few years, I’ve got more involved and am now a South West Advocacy Ambassador. I was honoured to receive the Trailblazer of the Year award in 2014.

I love writing, and often blog about different issues, like a particular inaccessible bank in my local town centre, or the lack of suitable housing for people with disabilities. Writing blogs for Trailblazers has given me the opportunity to experiment with different writing styles and develop my skills, and I’ve recently started writing pieces for the Huffington Post. Being an Advocacy Ambassador is really interesting too, though it does test my geography at times!

I’ve learned a lot of new skills through volunteering with Muscular Dystrophy UK, especially about disability rights. There are a lot of opportunities to get stuck into a project, whether that’s just general research or more in-depth fact-finding.

Thinking about my future plans, there are a lot of exciting research opportunities I could explore beyond my degree. I haven’t ruled out the idea of becoming a teacher, but it’d be great to discover a planet or something!”

Muscular Dystrophy UK’s volunteer Advocacy Ambassadors are trained in peer support to help people get the care, benefits and equipment they are entitled to and which are essential to their health, independence and quality of life. They are all affected – directly or indirectly – by a muscle-wasting condition, and have knowledge and personal experience of navigating social and health services. Find out more on our advocacy ambassador page.


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