The Tommy Salisbury Choroideremia Fund
The Tommy Salisbury Choroideremia Fund was founded in 2005 by Emma Salisbury and her mother Dot Grindley after Emma's son Tommy, then aged five, was diagnosed with choroideremia, a rare inherited eye condition which causes progressive loss of vision. Together, with the help of family, friends, colleagues and other families affected by choroideremia, they have fundraised tirelessly to help support vital research into the condition, organising numerous events such as golf days, coffee mornings, runs, walks and bike rides to name a few. To date, over £300,000 has been raised.
Although there is currently no way to treat choroideremia, researchers headed up by Professor Miguel Seabra at Imperial College London are investigating potential treatments.
Professor Sebara commented: “The Tommy Salisbury Choroideremia Fund has greatly improved our research capability, and the funding has significantly sped up the research being done, especially in gene therapy trials. As a direct consequence of their support we are now at a very exciting stage of our research into new treatments for choroideremia.”
In October 2011, funding provided by Fight for Sight through the Tommy Salisbury Choroideremia Fund enabled a British team of researchers to lead the world in starting the first clinical trial for the blinding disease.The trial is being led by Professor Robert MacLaren, Professor of Ophthalmology at the University of Oxford, and builds on gene therapy research performed in collaboration with Professor Miguel Seabra.
Professor MacLaren said “This clinical trial marks a major step in developing gene therapy treatments for photoreceptor diseases. It would not have been possible however without the scientific funding provided by Fight for Sight through the Tommy Salisbury Choroideremia Fund over the last five years. In my opinion, this is the single most significant factor that has enabled our British team of researchers to lead the world in starting the first clinical trial for this disease. We should not under-estimate the power that individuals can have in influencing the course of research through their fundraising activities."
On 28 September 2013 Junior Team Tommy, comprising of Tommy Salisbury and friends aged between 8 to 15 years, took part in the first ever Junior Triathlon at Hever Castle in Kent. The team did really well – swimming in a freezing cold lake is extremely daunting for a 15 year old let alone an 8 year old. All team members crossed the finishing line and so far £750 has been raised for the Tommy Salisbury Choroideremia Fund.
Many thanks to Ruby, George, Henry, Isabelle, Owen, Rosie, Harry, Lawrence, Charlie, Josh and Tommy.
On Saturday 6 July, dedicated grandmother Dot Grindley, from Lee, SE London hosted the Tommy Salisbury Choroideremia Fund’s ninth annual coffee morning raising over £1,600.
Over 75 ladies attended the event where they had a selection of handmade pictures, cards, bunting and home-made cakes to purchase. Tommy and friends were present to give Dot a hand and were in charge of guessing the weight of the Fight for Sight cake that was decorated by Tommy’s sister Amelia.
Dot Grindley said: “I wanted to say a huge thank you for everyone who was involved and making the coffee morning such a success yet again. We were thrilled we was able to raise so much and we’re determined to do all we can to help Tommy and everyone else living with Choroideremia and prevent others from getting the condition.”
The 8th Annual Golf Day was held at Shooters Hill Golf Club in South London. 80 golfers enjoyed surprisingly lovely weather after so much rain and snow during the winter and everyone took advantage of the sunshine.
Fight for Sight has appointed 12 year old Tommy Salisbury a patron of the organisation.
Tommy explained: “I can’t believe I have been chosen to become a Patron of Fight for Sight. I know how important research into choroideremia is for me and to thousands of others with the condition. I am too young at present to take part in any trials but keep in touch with some of the men who are trying the new treatment. I think that more funding should be invested into eye research. Everyone should support Fight for Sight. I’m proud to be part of such a fantastic organisation.”
Find out why 13 year old Lucy Trevarthen from Paignton in Devon has been featured on Food Glorious Food (ITV 6 March 8pm) after her adaptation of a generations' old family recipe was commended in a competition and how it's helping to raise money for the Tommy Salisbury Choroideremia Fund!
This Gala Dinner held at Shooter's Hill Golf Club raised £1,600 for the Tommy Salisbury Choroideremia Fund.
86 supporters enjoyed an evening of dancing, a delicious meal and a Mr & Mrs competition. Tommy's grandmother, Dot Grindley says 'We wish to thank all those who donated prizes and all our family and friends for coming.'
Paul Salisbury, 42, from Welling, South London joined forces with 11 friends on Sunday 18 November 2012 to form 'Team Tommy' and take on the Spartan Beasts Challenge in Kent. The team ran the obstacle course covering over 12 miles, taking on wall climbs, fire jumps and barbed wire crawls to cross the finish line.
Paul explained: “They call the Spartan Beasts Challenge ‘an obstacle race from hell’ for a reason, but the thought of giving up never crossed our minds. We’re determined to do everything we can to help Tommy and the thousands of others living with choroideremia, and I was incredibly lucky to have such a fantastic team taking on the challenge with me.”
It’s not too late to support Team Tommy, just visit www.justgiving.com/TeamTommySpartan.
On Sunday 28 October 2012, over 60 runners, including Emma Salisbury, completed London's Run to the Beat Half Marathon, raising over £10,000 for the Tommy Salisbury Choroideremia Fund.
Emma, who completed the run in 2 hours, 38 minutes, said: “When I mentioned to a few friends that I was looking for people to join me on the Run to the Beat half marathon, word just spread. I’ve been completely overwhelmed by the support of 60 friends and family who were all determined to take on the 13.1 mile route with me to raise funds for the Tommy Salisbury Choroideremia Fund.
“I wouldn’t call myself a natural runner; but a half marathon is a small step on the way to finding a potential treatment which could be available in the future for Tommy and other people living with choroideremia.”
To support Emma, just visit www.justgiving.com/tommy-salisbury.
On the 20 July Emma Salisbury took her place in the Olympic relay, carrying the Olympic torch on its way to light the cauldron on 27 July, for the official launch of the Olympic games.
100 people attended the celebrations in the Jolly Fenman pub. 88 people had travelled in an open top bus from Gravesend where Emma had run, to the venue.
The pub raised £509 for Fight for Sight and supplied a fantastic buffet for all those who came to support. There was a bouncy castle in the garden for the young children and Olympic themed games for older children, including tossing the bean bags, and discus throwing with paper plates.
A raffle followed the games, and included a top prize of a Caravan Holiday for a family of four.
Emma Salisbury and Dot Grindley played host to over 70 ladies who attended their eighth annual Coffee Morning on 7 July 2012. Handmade gifts including cushions, fabric bags and hand-painted cards were made by Tommy's grandmothers: Dot Grindley and Barbara Salisbury. Dot also provided homemade cakes for the occassion, using recipes from Tommy's Tucker recipe book - which was written to help raise funds for the Tommy Salisbury Choroideremia Fund.
Tommy and Amelia Salisbury were the event's main stall holders and did a great job at selling almost everything, as well as encouraging guests to guess the weight of the Fight for Sight fruit cake and to name a giant teddy bear. There was a raffle and a beautiful hamper was on offer as a door prize. The Salisbury family are so grateful to those who supported them yet again this year, helping them raise thousands for the Tommy Salisbury Choroideremia Fund.
January 2012 got off to a flying start, with press coverage for Emma and Tommy featuring in the Sun, as well as appearing on Channel Five News and ITV's Daybreak.
For more information about the Tommy Salisbury Choroideremia Fund and to find out about future fundraising events email Emma or Dot: firstname.lastname@example.org.