The Tommy Salisbury Choroideremia Fund

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Meet Tommy Salisbury

Tommy Salisbury is the inspiration behind the Family Fund, which was set up by his mum, Emma when Tommy was just five years old.

He received a diagnosis of choroideremia a year earlier. This rare, inherited retinal condition affects one in 50,000 people worldwide.

Tommy said, “My mum's granddad had it, so everyone in the family was tested. I think it’s good that I was told at a young age. It didn't come as a shock when I grew up, so I was prepared to deal with it as much as you can be with these things.”

Over two decades of fundraising, the Salisbury family has raised over £700,000 for Fight for Sight. Activities include entering regular teams into the London Landmarks Half Marathon, the London Marathon, and numerous other activities.

Tommy, a Junior Clerk in Chambers in the City of London, has participated in both. 

Running toward a brighter future

Emma Salisbury: Mum in a million

Tommy' Mum, Emma Salisbury, is one of the powerhouses behind the Tommy Salisbury Fund. Just months after Tommy's diagnosis, she completed her first fundraising activity - the 5K Hydro Active Women’s Run in Hyde Park.

"I think I needed something to put my mind into. Tommy got his diagnosis in February 2004, and by September me, my mum, cousin, auntie and best friend did the run in Hyde Park," said Emma.

"That was our first, and we raised around £8,000."

Emma's been funding ever since, and her passion and dedication have never wavered. 

Fundraising activities and a clinical trial

Emma has created a community of fundraisers who know and support Tommy's Fund. They have crafted events from golf days and coffee mornings to runs, walks and bike rides. 

One of the most memorable moments came via a phone call. Emma recalls: "The moment that sticks out is a call I got on the way to a medical health check in September 2011. The first operation of a clinical trial we’d helped fund had taken place, and it went according to plan."

Professor Robert Maclaren of the University of Oxford was running the trial. "He said it would not have been possible without the scientific funding provided by Fight for Sight through The Tommy Salisbury Choroideremia Fund."

For information on forthcoming events organised by the family or how to get involved, please contact Emma on tommysalisburyfund@gmail.com

More on Emma's fundraising efforts

Emma's tips for other families living with vision loss

1. Find out more

A diagnosis of an eye condition can feel overwhelming. Often, these conditions have unusual names and jargon attached. I'd advise anyone to get as much information as they can, ensuring it's from a reputable source and written in accessible language.

A to Z of eye disease

2. Understanding inherited conditions

Discovering that the eye condition is inherited can raise questions for the individual and wider family members. Understanding the genetics of vision loss can seem complex. I recommend Fight for Sight's guide to the genetics of vision loss. 

Genetics and the Eye

3. Connect with others impacted by vision loss

We've created a whole community through Tommy's fund. Connecting with others can be a great support. The RNIB has a directory of organisations across the UK offering support. 

You can read other people's stories of vision loss on Fight for Sight's website and details of projects it has funded. 

Your Stories

4. Ideas for fundraising

The Tommy Salisbury Fund consists of seasoned fundraisers who've done everything from bake sales to marathons. There are many ideas you can try - click on the link, below. 

Fundraising tips