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 £360,000 has been raised.
On Friday 28 February a dedicated family held a Rat Pack charity evening which raised nearly £3,500 for a cause close to their hearts.
Nearly 200 people attended the event organised by Emma Salisbury, from Welling, Kent. The Metro Gas Football Club, New Eltham, was turned into ‘New York, New York’ after being transformed into a 1950’s dance hall.
Emma’s 13-year-old son, Tommy, was diagnosed, aged five, with a rare inherited eye condition, called Choroideremia, which affects one in 50,000 people worldwide. Following Tommy’s diagnosis his family established the Tommy Salisbury Choroideremia Fund in 2005 through Fight for Sight, the main UK charity dedicated to funding eye research to prevent sight loss and treat eye disease.
Led by his mother Emma and grandmother Dot Grindley, the family has tirelessly raised over £360k to date which directly supported research into Choroideremia led by Professor Miguel Seabra at Imperial College London.
Professor Seabra’s research played a key role in identifying the function of the protein causing Choroideremia which enabled the world’s first gene therapy clinical trial for the condition led by Oxford Professor Robert MacLaren in 2011. The trial results were recently published in The Lancet and have already shown promising results in patients.
Emma said: “It’s devastating to know that Tommy has an incurable condition that will one day cause him to lose his sight. Since we got the news we’ve fundraised non-stop to raise vital funds for research and we’re delighted that all our hard work has enabled research to take place. However, we will only stop once a cure is found.
“A huge thank you to everyone who made the night such a success, from those who attended, to companies that kindly donated prizes for the raffle, which enabled us to raise such a staggering amount. Also to our local supermarkets including Sainsbury’s, Tesco and the Co-Op for donating cheese and biscuits for our enormous cheese board.”
On the night Paul Holgate aka Mr Frank Sinatra entertained the crowd as the family raised awareness in order to ‘start spreading the news’ about the condition and research. With the décor to add to the atmosphere from Nicole Coupland of High Flying Balloons.
Julian Jackson, Director of Development at Fight for Sight said: “The Tommy Salisbury Choroideremia Fund really doesn’t have any limits, from coffee mornings to sponsored runs – you name it they’ve done it! It’s evident that the support from Emma and Dot has helped with funding Choroideremia research and Fight for Sight is truly grateful for all their efforts and hard work.”
Media highlights from Choroideremia trial
The Tommy Salisbury Choroideremia Fund helped to support Fight for Sight with the recent media story on the Choroideremia trial led by Professor Robert MacLaren at Oxford University.
Without the money from the fund it would not have been possible for the world’s first gene-therapy trial to take place. The money raised by the family helped to fund the initial work by Professor Miguel Seabra at Imperial College London.
Tommy and his grandmother Dot did a fantastic job talking to Eamonn Holmes on Sky’s Sunrise on 17 January 2014 and the story made national news featuring in the Daily Mail, Independent and the Financial Times, plus many more. In total we got over 80 pieces of coverage, across national, regional, consumer, trade and even some international pieces – which was a fantastic result!
A big thank you to everyone involved and we’re excited to know what will happen at the next stage – watch this space.
Without funds raised by the Tommy Salisbury Choroideremia Fund through Fight for Sight, the UK’s main charity that funds pioneering research to prevent sight loss and treat eye disease, the world’s first gene-replacement clinical trial for Choroideremia would not have been possible.
Trial results published today have been very promising and surpassed the expectations of the Oxford University researchers leading the research.
Choroideremia is a rare inherited retinal condition which is caused by defects in the Choroideremia gene (CHM). It affects one in 50,000 people worldwide and can lead to progressive loss of vision. It mainly affects males including 13-year-old Tommy Salisbury from Welling, Kent, who was diagnosed with the condition aged five.
Following Tommy’s diagnosis his family established the Tommy Salisbury Choroideremia Fund in 2005 through Fight for Sight. Led by his mother Emma and grandmother Dot Grindley, the family has tirelessly raised over £360k to date which directly supported research into Choroideremia led by Professor Miguel Seabra at Imperial College London.
Emma Salisbury said: “It’s a mother’s worst fear to know that your child has an eye condition that’s currently incurable and will cause them to lose their sight. We’ve put our hearts and souls into fundraising and are delighted to have been able to support the initial steps to help make the clinical trial possible. We’ll continue to do everything we can to support Fight for Sight until a cure is found.”
Professor Seabra’s research played a key role in identifying the function of the protein causing Choroideremia which enabled this clinical trial.
The clinical trial published today led by Professor Robert MacLaren, Professor of Ophthalmology at the University of Oxford, who is also a consultant surgeon at the Oxford Eye Hospital and honorary consultant at Moorfields Eye Hospital, began in 2011.
Although, the Salisbury family have been heavily involved, Tommy was too young at the time of this trial to take part.
Dolores Conroy, Director of Research at Fight for Sight said: “We’re delighted, to have supported Professor Seabra’s work through the Tommy Salisbury Choroideremia Fund, which has allowed Professor MacLaren and his team to produce some incredible findings. We’re looking forward to seeing more positive results from the trial in the next stages.”
Professor MacLaren said “This clinical trial marks a major step in developing gene therapy treatments for retinal diseases. It would not have been possible without the scientific funding provided by Fight for Sight through the Tommy Salisbury Choroideremia Fund. In my opinion, this is the single most significant factor that has enabled us to lead the world in starting the first clinical trial for this disease. We shouldn’t under-estimate the power that individuals can have in influencing the course of research through their fundraising activities.
“We didn’t expect the results to show such improvements in visual acuity. It’s still too early to know if the gene therapy treatment will last indefinitely, but we can say that the vision improvements have been maintained for as long as we’ve been liaising with the patient, some as long as two years.”
The results of the trial, which was supported by National Institute for Health Research and the Wellcome Trust, appeared in The Lancet medical journal today 16 January 2014.
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.