Changemaker Profile

Alan

Around 25 years old I was diagnosed with ataxia. I first realised something was wrong when I was making a sandwich for work, and I couldn’t spread the butter on the bread. I found this hard to communicate with the GP, who thought I was just tired. This went on for 8 years and every time I was diagnosed with something new. I knew that something wasn’t right.

Finally, after further testing and seeing a consultant, my GP said I had a rare condition called ataxia. Ataxia is a rather complex condition; the main characteristics is lack of co-ordination and lack of speech. People often think we are drunk, when we are not, we might just be slower than everyone. Once I knew I had a rare condition, I wanted to reach out to the people who were in the same position as me and help them feel less isolated. I started my own patient group to help spread awareness and provide people with information about ataxia.

I live in a very small village of 17 people, so I am that 1 person out of 17 who lives or affected by a rare condition.

Launch Art Exhibition

I am number 17 launched in January 2020 with an art exhibition at the Oxo Gallery, showcasing each changemakers experience. Each changemaker was paired with an artist to create a bespoke piece of artwork, ranging from paintings, photography to physical installation. Below you will find information on the artwork created and the artists profile.

THE STRENGTH TO REBLOOM

The concept was inspired from Alan’s experience of living with the rare disease, ataxia. The journey of the flowers that bloomed as beautiful as usual, but growing with less and less vitality is a metaphoric representation of the experience with ataxia that the patients will progressively lose their strength and coordination abilities which affecting their balance, speech and motion. However, it doesn’t mean the situation is hopeless. For the patients, for their families, for the doctors, and for the other general public, raising more awareness and care of this rare disease could improve the conditions. And that’s the meaning embodied in the interaction in “The Strength To Rebloom” – the audience do not just watch the flowers journey, they could also affect and support the flowers to rebloom by holding the bud.

Artist Profile

Bingxin Feng

Bingxin Feng is a Chinese born, London based digital artist and filmmaker. Her practice takes form through moving images, filmmaking, photography, and interactive installation/performance design.

This campaign isn’t just about us – it’s about you. If you live with, or care for someone with a rare disease, share your experience on social media using the hashtag. Help us be heard.
#IAmNumber17

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