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 four, 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, more than £500,000 has been raised.
If you'd like to donate to the Tommy Salisbury Choroideremia Fund please text TOMM10 £5 to 70070 (or you can choose an amount up to £10).
For more information about the Tommy Salisbury Choroideremia Fund and its future fundraising events email Emma or Dot: email@example.com
Latest NewsRead about some of the events, activities and stories from the Tommy Salisbury Choroideremia Fund.
February 2019 – Hollywood Oscars night raises £1,100 for choroideremia research
100 guests dressed up as film charterers and film stars to walk the red carpet and enjoyed a fun evening at the casino, with a cocktail on arrival and canapes served throughout the evening.
There was a short Oscar’s ceremony in which we honoured our loyal supporters with awards for Best dressed, Best raffle ticket seller, Best friendship and Best sister to Tommy. Each winner received a small Oscar and a bottle of fizz to celebrate.
Emma Salisbury, Tommy's mother said “I can’t believe how much fun we all had dressing up, as all Tommy’s friends are now 18 year, they all attended looking like they were from the Peaky Blinders. Tommy himself was Al Capone. Paul and I were Julia Roberts and Richard Gere in Pretty woman and Mum and Dad were Helen Mirren and Bob Hoskins We laughed all evening and now all our friends and family want to do it every year. To think we had this much fun raising money was lovely.”
November 2018 - Steve Knightley supports the Tommy Salisbury Fund
Steve Knightley is a multi-award winning singer-songwriter/musician and founder member of widely acclaimed folk/acoustic roots trail-blazers Show of Hands. Steve has performed in venues from the Albert Hole in Bristol to the Albert Hall in London. His impressive back catalogue of songs are modern classics, still filling the folk clubs and festival fields, and forever influencing the next generation of folk artists.
Steve is reprising his highly popular ‘Songs and Stories’ Tour in 2019 with ‘Part 2 – Roadworks’. It’s a stripped-back, one-man show that’s infused with wit, warmth and alchemy, beautifully illustrated by his songs of history, love and conscience. He will be performing a benefit concert for Fight for Sight, at 1532 Performing Arts Centre in Bristol on Thursday February 28 2019 from 7:30pm. Steve has previously held events in support of The Tommy Salisbury Fund at Fight for Sight and we are really appreciative to have his support once again.
Tickets can be booked at www.bristolticketshop.co.uk or Tel. 0117 929 9008/0370 4444 400.
October 2018 - Positive results from gene therapy breakthrough for treating choroideremia
The Tommy Salisbury Choroideremia Fund raised £500,000 which helped Fight for Sight fund the early stage research at Imperial College London which led to this breakthrough at Oxford University. Positive results of the world’s first gene therapy trial for a genetic cause of blindness known as choroideremia have been reported in this week’s edition of Nature Medicine.
The trial involved 14 patients receiving a single injection into the back of the eye of a virus containing the missing gene and began in 2011 at the Oxford Eye Hospital - part of the Oxford University Hospitals NHS Foundation Trust. By the end of the study there was a significant gain in vision across the group of patients as a whole.
Furthermore, of the 12 patients who received the treatment without any complications, 100% either gained or maintained vision in their treated eyes, which was sustained for up to 5 years at the last follow up. During this time only 25% of the untreated eyes which acted as controls maintained vision. The gene therapy treatment was generally well tolerated and there were no significant safety concerns.
Professor Robert MacLaren the ophthalmologist who led the trial said: “The early results of vision improvement we saw have been sustained for as long as we have been following up these patients and in several the gene therapy injection was over 5 years ago. The trial has made a big difference to their lives.”
Dr Neil Ebenezer, Director of Research, Policy and Innovation at Fight for Sight, said: “All research breakthroughs are made by standing on the shoulders of others. Our mission is to fund research that will stop sight loss and we’re delighted to have been part of this breakthrough which will have huge benefits for the future. This technique could transform how we treat diseases and could have broad applicability to a range of other conditions.”
The success of the Oxford study has since led to a much larger international gene therapy trial involving over 100 patients across nine countries in the EU and in North America. It is now led by Nightstar Therapeutics, a gene therapy spin-out company established by the University of Oxford and Syncona to develop the treatment further. If successful the follow on trial could result in the gene therapy treatment being formally approved by the relevant regulatory bodies worldwide.
Overall gene therapy is a new treatment that is currently being developed in several trials for a variety of diseases. The concept of gene therapy is to alter or correct inherited diseases at the level of the DNA and if successful, a single treatment might have life-long effects. These early results support the notion that a single gene correction can have long-lasting beneficial effects on nerve cells of the retina to prevent blindness.
Choroideremia is one disease in a spectrum of inherited eye diseases sometimes referred to as ‘retinitis pigmentosa’ and which have now become the most common cause of untreatable blindness in young people. Last month, the European Medicines Agency formally approved its first gene therapy treatment for a different eye disease. Experts predict that other currently incurable diseases are likely to follow and will have approved gene therapy treatments in future years.
Chris Hollowood, Chief Investment Officer at Syncona, commented: “Nature Medicine’s publication of the findings of the first choroideremia gene therapy trial is a great endorsement of the work by Professor Robert Maclaren and the team and validation of the early results that encouraged Syncona to partner with Robert to found and build Nightstar. Since then, Nightstar has advanced the therapy to a pivotal Phase 3 trial. We look forward to continuing our support of Robert and Nightstar as we seek to bring transformational treatments to patients.”
June 2018 - 13th Annual Coffee Morning Raised £2050
Tommy’s grandparents Alan and Dot Grindley opened their house and garden on the 9 June 2018 for 78 ladies to come and join Tommy’s mum Emma, his sister Amelia and his grandmothers Dot and Barbara for their 13th annual Coffee Morning.
Grandad Alan had worked for weeks to make sure the lawns and garden were immaculate for the occasion – it looked stunning and the sun was shinning throughout the day. Barbara make beautiful cushions and Dot made chutneys, handmade and painted cards and knitted pencil cases and purses for the children. Amelia assisted her in making 10 delicious cakes, scones, and dozens of cupcakes to have with their coffee.
Dot said, “We are always amazed at the generosity of all our friends and family on these occasions, it was a truly lovely morning and we are enormously grateful to several local companies who once again supplied prizes for our raffle”.
April 2018 - Team Tommy take on the London Marathon
The Salisbury family once again dusted off their running shoes to take on the ultimate challenge. Running alongside 40,000 people, the Salisbury’s braved the scorching streets of London to complete the hottest London Marathon on record.
On 22 April 2018, Tommy Salisbury’s sister Amelia, and cousins, Daniel McDonnell and Zoe Cleghorn took on the mammoth challenge and successfully completed it! They all did amazingly well and were all relieved and ecstatic to cross the finish line and get their medals.
Not only were they all successful at finishing the marathon, but they also set their £6,000 target ablaze by raising an amazing £8,300 so far! The family continue to be unstoppable in their fundraising effort to support medical research, in order to find a cure or treatment for Choroideremia.
Emma, Tommy’s mum said, “It was a truly wonderful and emotional day and I am so proud of all of them for their commitment to training and on the day they were super stars - it was great to be there round the course cheering them on”.
May 2018 - Golf day raises almost £2000 for vital eye research
Imagine being told your child will lose their sight and that there’s no cure – yet. It’s difficult to imagine having that conversation but it’s what had to happen in the Salisbury family when Tommy, at the age of five, was diagnosed with choroideremia, a rare inherited condition which causes progressive loss of vision.
The family and some of their friends decided the thing they could do to help save Tommy's sight is to fundraise for research. Their latest fundraising effort has raised £1,800 to add to the impressive £500,000 raised in the last decade for Fight for Sight.Dot Grindley, Tommy’s Grandmother, and one of the founders of the Tommy Salisbury Choroideremia Fund which fundraises for Fight for Sight, reports on the successful golf day held last month [26 April 2018] to raise funds for sight saving research.
“72 golfers enjoyed the annual Tommy Salisbury Choroideremia Fund Charity Golf Day at Shooters Hill Golf Club in South London with a shot gun start at 1 p.m. Thank goodness the awful rain stayed away all afternoon which enabled us to remain dry and play well. We raised £1,800 for the fund and we would never have been able to achieve this without donations of 4 ball games from other local clubs – as always, we are extremely grateful for their support. Tommy’s parents and grandparents - Paul, Emma and Alan and me - all agreed it was a special day and wish to thank Shooters Hill catering staff for supplying a great meal at the end of the day and the greens staff for their hard work all winter in keeping the course in excellent condition. The generosity of the supporters never ceases to amaze me in these difficult times we are all facing.”
Emma, Tommy’s Mum, said:
“The money raised by the Tommy Salisbury Fund will be going to UCL to fund Professor Miguel Seabra’s ongoing research into choroideremia. Despite the advances in the research, it is still not known why and how cells die and vision loss occurs. Our money is enabling Professor Seabra to expand his team and therefore achieve his goal of developing a treatment sooner.”
More on the Tommy Salisbury Fund can be found here.
Feb 2018 - Roaring success of family fundraisers celebrated with a roaring twenties night
Since 2005, when Tommy Salisbury was diagnosed with choroideremia at the age of just five years old, his family has been at the forefront of the Fight for Sight. This year, after more than a decade of fantastic fundraising, they’re marking the incredible milestone of raising in excess of £500,000 for research into choroideremia.
Choroideremia is a rare inherited condition which causes progressive loss of vision. There is no treatment for the condition – yet. But the Salisbury family have teamed up with the UK’s leading eye research charity, Fight for Sight, to fundraise specifically for research into choroideremia.
And having reached the magnificent milestone of half a million, how did they choose to celebrate? With a fundraising event that generated another £1,600!
More than 100 guests donned their glad rags and 1920s style flapper dresses for a casino night to mark the Tommy Salisbury Fund’s momentous milestone. Guests were served a gin cocktail on arrival and canapes throughout the evening and, by all counts, everyone played the tables, danced and had fun.
Emma Salisbury, Tommy’s Mum and the driving force behind the fundraising, said: “I can’t believe what a huge success it was. I think it was the best event we have ever organised! Everyone had so much fun dressing up, not one person came without looking like they were from the Peaky Blinders or the Mafia and the girls looked gorgeous! We danced, laughed and gambled all evening. This really is a massive milestone in our journey in finding a treatment for choroideremia and we have had so much fun in raising this money, reaching £500k is just unbelievable!! I have so many people to thank who have been supporting us since 2005 and helped us achieve this milestone.”
The total figure from the thirteen years of fundraising stands at £546,199.17 (as of February 2018).
As a result of these fundraising efforts, researchers have progressed to clinical trials on a potential treatment for Tommy’s condition – just last month researchers moved into Phase III trials, moving one step closer to the goal of the first ever treatment for choroideremia.
More on the Tommy Salisbury Fund and Fight for Sight can be found on here: https://www.fightforsight.org.uk/get-involved/tommy-salisbury-choroideremia-fund/
Sept 2017 - Mudsy’s Mud Kitchen pitching in to help save Tommy’s sight
Imagine being told that your child will lose their eyesight and that there isn't a cure – yet. It’s difficult to imagine having that conversation but it’s what had to happen in the Salisbury family when Tommy, at the age of five, was diagnosed with Choroideremia, a rare inherited condition which causes progressive loss of vision.
But the family and some of their friends decided the thing they could do to help save Tommy's sight is to fundraise for research.
Their latest fundraising idea, run as a raffle over the summer, was the offer of a limited edition mud kitchen, hand painted by the artist Mudsy. A mud kitchen is designed to encourage children to play outside and get their hands dirty.
The family and their fantastic supporters smashed their original fundraising goal of £600 to raise more than £1200 with this one raffle. It was a simple idea, asking people to donate £5 in return for a spot in the raffle, which was won by Jessica Reid.
Tommy’s Mum, Emma, said “I am so grateful to Joel & Natalie for donating such a fantastic prize to Tommy’s fund. This is the second mud kitchen that they have kindly given us and have been part of Team Tommy since 2005 and I know we can count on their support until our goal is reached. Thank you both so much.”
This adds to the incredible total of more than £500,000 which the Salisburys and their friends and family have raised in the last 13 years. As a result of these fundraising efforts, researchers have progressed to clinical trials on a potential treatment for Tommy’s condition.
Although the raffle has taken place, you can still make a donation with funds going to support Fight for Sight: https://www.justgiving.com/fundraising/mudkitchens
July 2017 - Survival of the Fittest
On 8th July 2017, 40 brave fundraisers took part in Survival of the Fittest, raising money to support the Tommy Salisbury Choroideremia Fund.
The 10km route surrounding Wembley Stadium was punctuated with 10 unique and challenging obstacles. This included a water slide, monkey bars, wall climb and many more to test endurance! The team included Tommy Salisbury, dad Paul, mum Emma, sister Amelia and cousin Daniel. Amelia and Daniel will be taking on another challenge next year with the iconic Virgin Money London Marathon.
A fantastic £1,847.50 was raised and this will be used for medical research in finding a cure or treatment for Choroideremia.
Tommy was diagnosed with choroideremia in 2005. Since then his family and friends have been raising money to support their quest and to date have raised over £500,000.
July 2017 - Cotswold Way Challenge
On 1 July 2017 Mark Walters and his friend Danny Lynch completed the 100km challenge in 25 hours and Archie Mark’s youngest son was there to meet them on the finish line – a very proud young man.
Archie was diagnosed with Choroideremia in 2016 and his Dad along with his friend wanted to raise money for the Tommy Salisbury Fund to ensure that people affected by this disease have the best possible chance of fighting it.
Mark said, “Thanks to this fund, they have been able to develop research and there is now a genetic trial which could offer Archie a cure, we were only too pleased to be able to help raise as much money as we could”.
June 2017 - 12th annual coffee morning raised £2,520.00 for choroideremia
Over 70 visitors attended the annual Coffee Morning to help raise money for the Tommy Salisbury Choroideremia Fund. Hosted by Tommy’s mother Emma in his grandparents back garden, the event brought together many friends and family.
Tommy’s grandmothers, Dot and Barbara, who also co-hosted the yearly event brought along hand painted cards, knitted children’s hair slides and bobbles, purses, homemade chutney and cushions on top of the usual cakes and treats.
Dot said: “We are always amazed at the generosity of all our friends and family on these occasions, it was a truly lovely morning and we are enormously grateful to several local companies who once again supplied prizes for our raffle.”
The next annual coffee morning will be held next summer, but there are lots of other fundraising activities planned so we can continue finding a cure for choroideremia, and other sight loss diseases alike.
April 2017 - Golfers raise another £2,000 for choroideremia research
The 12th Annual Golf Day at Shooters Hill Golf Club in South London raised over £2,000 in April. The money will go to Fight for Sight’s Tommy Salisbury Choroideremia Fund which funds research into choroideremia, a rare inherited disease affecting men which can lead to complete blindness. Since its founding in 2005, the Fund has raised over half a million pounds.
78 golfers took part in the golf event alongside Tommy’s parents Paul and Emma, and his grandparents Alan and Dot. Terry Loveday was awarded first prize with Tony Enright in second place. Val Lewis won the ladies’ competition.
Jan 2017 - The Microperimeter has arrived
The Microperimeter has now arrived in Oxford and will be available to all Choroideremia patients on their next visit.
Professor Robert MacLaren said: “The clinical data generated by this device will be of invaluable assistance in getting eventual regulatory approval of the gene therapy as a licensed medicine.''
Thanks to all those for their generous support of the gene therapy programme. Without this amazing support we would not have the Microperimeter.
Nov 2016 - Circolo Trentino di Londra Association Supports Choroideremia Research
The Circolo Trentino di Londra Association chose to support Fight for Sight’s Tommy Salisbury Choroideremia Fund for another year at their annual Dinner and Dance in November 2016.
A fantastic meal was served followed by a raffle which raised £500 for the fund.
Emma said “This year Paul and I were able to attend the evening with family members and had an enjoyable evening with everybody dancing and singing the night away. Once again we’re grateful to their President, Graziano Ferrari, for supporting the fund and helping the fight against sight loss.”
Nov 2016 - Fundraising Family Will Stop at Nothing until a Cure is Found
Following on from a successful world’s first Phase I gene therapy trial for choroideremia, Professor Robert MacLaren and his team at Oxford University and the Oxford Eye Hospital at the John Radcliffe Hospital have started a Phase II trial enrolling 30 patients.
Through sheer determination the Salisbury family, helped to raise a staggering £45,000 to purchase an operating microscope with integrated optical coherence tomography (OCT) that will refine the surgery that is integral to the gene replacement therapy led by Professor Robert MacLaren.
The family have been supporters of Fight for Sight, the UK’s main eye research charity since Tommy, 16, was diagnosed with choroideremia, an incurable condition, aged four. After Tommy’s diagnosis the family set up the Tommy Salisbury Choroideremia Fund through the charity and for the past decade have raised over £500,000 to fund eye research into the condition.
Mum of three Emma Salisbury, 46, from Welling, along with her mum, Dot Grindley, who set up the fund said: “We decided that fundraising was what we needed to do in order to make a difference. We contacted Fight for Sight and through them we set up the Tommy Salisbury Choroideremia Fund and since then we’ve been raising money year after year.
“Through our efforts we were able to help fund initial research that enabled Professor MacLaren to start the first clinical trial, so to be able to continue to raise additional funds and support the second phase is really exciting. It gives Tommy and us as a family tremendous hope that one day a cure will be found.”
Choroideremia affects approximately 50,000 men worldwide, it is caused by a genetic fault in the REP-1 gene and gene therapy is being trialled to replace the faulty gene with a healthy one. The intraoperative OCT microscope enables surgeons to track changes in the retinal anatomy in real time and thereby permit safe and precise delivery of the gene therapy with the ultimate goal of improved vision for patients.
Whilst Tommy is too young to take part in the trial the patients will have visual function tests including; best corrected visual acuity, microperimetry (assesses the visual function of a specific area of the retina), and retinal sensitivity tests for comparison of baseline values conducted six months after surgery.
Professor of Ophthalmology at University of Oxford Robert MacLaren said: “On behalf of the Clinical Ophthalmology Research Group at the University of Oxford I would like to thank all its generous benefactors, including the Salisbury family, for assisting us in raising funds for an OCT operating microscope for the Oxford Eye Hospital. The equipment is being used in exciting new gene therapies for the treatment of patients suffering from incurable eye conditions.
“By using the OCT operating microscope it allows for better and safer outcomes for patients due to more refined surgery using the microscope. If successful this trial can be translated to other conditions such as retinitis pigmentosa, which affects 1 in 4,000 people.”
Dr Dolores Conroy, Director of Research at Fight for Sight said: “Professor Robert MacLaren and his team at Oxford have been making incredible breakthroughs. We were delighted to have been involved with the first phase of the clinical trial, which had promising results for patients. Having raised vital funds it has allowed a crucial piece of equipment to be purchased. As always we are incredibly grateful to the Salisbury family who are passionate supporters of the charity and will stop at nothing until a cure is found for Tommy and thousands of other patients. We wish Robert and this team every success with the trial and glad we can be part of it.”
The purchase of this vital piece of equipment called OPMI Lumera 700 Rescan is thanks to a number of funders including; Fight for Sight, Fight for Sight Tommy Salisbury Choroideremia Fund at Fight for Sight, National Eye Research Centre, Choroideremia Research Foundation USA, Saturday Hospital Fund and benefactors of the MacLaren Group. The project has been funded by the Efficacy and Mechanism Evaluation (EME) Programme, a Medical Research Council (MRC) and NIHR partnership.
The Salisbury family will attend a reception for benefactors who helped fundraise for the OCT microscope being held on Tuesday 8 November at the John Radcliffe Hospital, part of Oxford University Hospital NHS Foundation Trust
Watch Tommy’s Fight for Sight story here and support choroideremia research by texting TOMM10 £5 to 70070.
August 2016 - £320.00 raised for Choroideremia research
On Saturday 6 August 2016 over 60 golfers took to the tee to raise money for choroideremia research projects funded through Fight for Sight.
The event was held at Shooters Hill Golf Club and was organised by Len Newlands the President of the Club.
Len has been a supporter of The Tommy Salisbury Choroideremia Fund at Fight for Sight for many years and we are extremely grateful for his support yet again this year.
It was a beautiful day and enjoyed by all those who took part.
July 2016 - 12th Annual coffee morning raises £1,720 for eye research
The Salisbury family raised £1,720 at their annual coffee morning – the event initially started after Tommy, 16, was diagnosed with choroideremia, a rare inherited eye condition, when he was four-years-old.
The family set up the Tommy Salisbury Choroideremia Fund at Fight for Sight and since then they have been on a mission to raise vital funds to support eye research into the condition. They will soon be approaching the £500k donation mark – which is an incredible achievement.
The event took place at Tommy’s grandparent’s house and his grandmother, Dot Grindley said: “We cannot express our thanks to everyone who attended and helped to raise this fantastic amount. We are always so humbled by the continuous support and the funding will help support vital eye research.”
July 2016 - Prime Minister Recognises a Mum’s Fight for Sight Mission
A mother of three, from Welling, Kent, has been recognised for her charity work through the Prime Minister’s Points of Light scheme.
The No. 10 Downing Street initiative recognises outstanding individual volunteers across the country and Emma Salisbury, 42, has been selected having raised £475k to support vital eye research.
In 2005 Emma’s son, Tommy, then aged four was diagnosed with a rare inherited eye condition, called choroideremia. With no treatment currently available, she was determined to do something about it and set up the Tommy Salisbury Choroideremia Fund at Fight for Sight, the UK’s main eye research charity.
Emma 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. You think you can imagine what it would be like but you can’t imagine. You feel like you are grieving for something that you haven’t really lost yet”.
Through sheer hard work and determination Emma, along with family and friends, raised funds to support Professor Miguel Seabra’s research work at Imperial College London. This research played a key role in identifying the function of the protein REP-1 causing choroideremia, this was the stepping stone that enabled the world’s first gene-replacement therapy trial to take place at Oxford University.
Emma continued: “Once you start looking into a condition you realise that funding is needed for medical research. Without eye research, you’re never ever going to find a treatment. There and then we decided that fundraising was what we needed to do in order to make a difference. That’s why we support Fight for Sight to help find a cure for Tommy and everyone else living with the condition. I’m delighted to be acknowledged for the Points of Light award but I really couldn’t have done this without the support of my friends and family.”
Former Prime Minister David Cameron said: “After her son was diagnosed with choroideremia, Emma kindly offered support to others living with the condition by raising impressive amounts for charity. Emma’s dedication to fighting for sight has improved the lives of so many people with this debilitating eye condition. I’m delighted to name her a Point of Light.”
Michele Acton, Chief Executive of Fight for Sight, said: "We are thrilled that Emma has been recognised for her tremendous achievements in raising funds for the Tommy Salisbury Choroideremia Fund at Fight for Sight. Choroideremia is a blinding condition for which there is currently no treatment, thanks to Emma’s determination, drive and commitment, British researchers have started the world’s first clinical trial of a potential treatment for this condition.”
June 2016 – Golf day a ‘hole in one’ success
Golfers took to the tee on 25 June raising £400 for the Tommy Salisbury Choroideremia Fund at Fight for Sight to help fund vital eye research.
This was the fourth event to be held at the Burstead Golf Club in Essex. It was organised by 44-year-old Paul McGuire, from Billericay, who was diagnosed with choroideremia in March 2013.
Paul said: “We had such a fantastic day and I would like to thank everybody for their kind and generous donations.”
June 2016 - Fight for Sight’s Summer Party was a Scorcher
The Tommy Salisbury Choroideremia Fund at Fight for Sight held a summer party for 80 friends and family, at Shooters Hill Golf Club, on Saturday 25 June, to support eye research.
It was an evening of drinking, dancing and great entertainment from the band The Talking Strawberries with DJ Tall Order playing afterwards. The evening raised an amazing £1,400 for the fund and a huge thank you to everyone who supported and attended.
Tommy’s mum Emma said: “We’re so grateful for the continued support from our friends and family the evening was such fun and all for a good cause. We can’t wait to do it again!”
May 2016 - Choroideremia gene therapy gives lasting improvements to vision
We have had fantastic news that after 3 ½ years the patients who took part in the world’s first gene therapy clinical trial for choroideremia have had a real and long-lasting benefit to their eyesight. The clinical trial was led by Professor Robert MacLaren at the University of Oxford and was made possible due to research by Professor Miguel Seabra at Imperial College London supported via the Tommy Salisbury Choroideremia Fund. The findings were reported by the BBC and you can read our full story in the Express.
April 2016 - Annual Golf Day Raises Thousands for Vital Eye Research
Over 70 golfers took part in the Tommy Salisbury Choroideremia Fund's annual golf day, which raised £2,200 to support vital eye research into choroideremia.
The 11th annual golf day took place at Shooters Hill Golf Club, South London. The day was a ‘hole in one success’ and the golfers braved the elements with a smile throughout the bright but extremely cold day.
Tommy's parents, Paul and Emma, said: "It was a really special day - we're so grateful to all the golfers who took part and to the club for hosting the day. A huge thank you for everyone's generosity - it never ceases to amaze us!
There were a series of winners on the day including:
Marcus Sewell taking first prize (with 41 points playing off +1 which was a fantastic achievement)
Closely followed by Gary Whitelock who took second prize (with 40 points)
The captain of the 2016 ladies team secured the ladies title on the day.
To support the fund please text TOMM10 £10 to 70070
April 2016 - Going the Distance to Help Tommy’s Fight for Sight
A team of runners will go the distance for the UK’s main eye research charity Fight for Sight, at the Virgin London Marathon, on Sunday 24 April.
The team including Meghan Cole, 22, from Sidcup, is hoping to cross the finish line with boyfriend Sam Pulman, 23, from Dartford, along with Fred Roberts, 20, from Swanley and Zoe Cleghorn, 27, from Leeds. They will join thousands of runners taking part in the gruelling 26.2 mile challenge across the capital.
They will be running for Tommy Salisbury, 16, from Bexley, who was diagnosed with a blinding eye condition, called choroideremia, when he was four years old.
In 2005 Tommy’s mum, Emma and his grandmother, Dot Grindley, set up the Tommy Salisbury Choroideremia Fund via Fight for Sight. The family are determined to raise awareness of the condition that affects 1 in 50,000 people and support eye research, so Tommy can have a future he can see.
The family has raised an incredible £460k to date and helped to fund Professor Miguel Seabra research, at Imperial College London. This initial work led to the world-first clinical trial into the condition, led by Professor Robert MacLaren and his team at Oxford University. The trial has shown positive results and with a phase II trial about to begin we have never been closer to finding a treatment.
This is the longest distance Zoe has run having completed a half marathon for the charity previously. Zoe, who works at Bibby Financial Services, said: “I’m constantly inspired by the work that the Salisbury family does in raising money for Fight for Sight and Tommy’s fund. It’s an amazing cause and Fight for Sight doesn’t always get the recognition it deserves – a marathon is a massive challenge and I can’t wait to run for the charity.”
Fred, a PE teacher, who is Emma’s second cousin, said: “I have always been aware of Tommy’s condition and seen how much effort the family has put in to raising awareness and vital funds to support eye research. I was keen to go the distance and help contribute by running my first marathon.”
Meghan, a receptionist for Flint Insurance, added: “I wanted to run the London Marathon to help support Fight for Sight and Tommy’s fund. The family has made a tremendous effort in helping to shape eye research into Tommy’s condition and I was keen to get involved and help in any way I could.”
Catherine Woodhead, Director of Fundraising at Fight for Sight, said: "We are grateful to the Team Tommy runners for their continued support in helping the fight against sight loss. The charity relies on people like Meghan, Sam and Fred to help raise funds for vital eye research and help get us a step closer to creating a future everyone can see. Very best of luck and we will be there cheering you on every step of the way.”
Feb 2016 - The Circolo Trentino di Londra Association support the Fight for Sight
Thank you to The Circolo Trentino di Londra Association for choosing to support Fight for Sight’s Tommy Salisbury Choroideremia Fund.
Vital funds to help support choroideremia research were raised at the company’s annual dinner and dance event. A fantastic meal was served followed by a raffle that helped to raise £500 for the fund.
Tommy’s mum Emma said “The evening was an enormous success with everybody dancing and singing the night away. We are so very grateful to their President, Graziano Ferrari, for supporting the fund and to everyone who donated.”
Jan 2016 - Golf Club Supports the Fight 'FORE’ SightThe Burstead Golf Club, Essex, raised £2,600 to help the fight against sight loss and support research into the rare condition, choroideremia.
The senior's captain, Norman McGuire, selected the Tommy Salisbury Choroideremia Fund, via Fight for Sight, for the club's 2015 Charity of the Year. Fundraising throughout the year has helped raise the fantastic amount.
Tommy's grandmother, Dot Grindley, said: "We are extremely grateful to Norman and the club for all their hard work the past year, resulting in raising this wonderful amount. Thank you to everyone for taking us a step closer to finding a cure for the condition."
Norman chose the charity as his son, Paul, was diagnosed with choroideremia, in March 2013, and since then they have helped raise several thousands to support eye research.
Paul hopes to be involved with any future choroideremia trials - following the positive results published in The Lancet in January.
July 2015 - Annual coffee morning raises £1,700
On, 11 July 2015, Emma Salisbury and Dot Grindley held their 10th annual coffee morning raising vital funds for the Tommy Salisbury Choroideremia Fund via Fight for Sight.
The event was hosted in Dot’s garden and 80 ladies attended. They could purchase hand-painted cards, beautifully made cushions and make up bags, homemade chutney and many more goodies to raise money. All the cakes were homemade with TLC and proved popular - with not a crumb left over!
A raffle took place with prize generously donated by friends as well as local shops – which helped to raise the overall total.
Dot said “A huge thank you to all our friends and family for their support and joining us at the coffee morning. It’s such a lovely way to catch up with everybody and to provide an update on the choroideremia research and to thank them for making it all possible.”
June 2015 - £1,900 raised for Choroideremia research
On Saturday 27 June, over 60 golfers teed-off to raise money for the Tommy Salisbury Choroideremia Fund via Fight for Sight - to help support research into the inherited condition.
The event was held at the Burstead Golf Club, Essex, for the third year running and was organised by Paul McGuire, 43, who was diagnosed with choroideremia in March 2013.
Paul was absolutely thrilled by the amount raised. He said “I would like to thank all of the golfers and their families who attended on what was such a fantastic day. I am truly grateful for all of the generous donations and to the Brentwood Lions and Identica Limited for their donations. The money raised will support research into choroideremia.”
Following the success of Professor Robert MacLaren’s world’s first gene-replacement therapy trial (the results of which were published in The Lancet in January 2014), Paul is hoping that he may be able to participate in any future trials.
May 2015 - Team Tommy Get Tough
On Saturday 2 May Team Tommy will take on the Tough Mudder Challenge, a 10-12 mile obstacle course designed to test physical strength and mental grit, to raise funds for vital eye research into choroideremia.
The team consists of: Tommy’s parent’s Paul & Emma Salisbury, Jay Clark, Matt Wyatt, Rog Murphy, Vernon Alden-Smith, Tina Harre, Terri & George Williams, Joe & Leanne Lacey, Sam & Lou Wall, Jordan Bater, Tom Waller, Buster Devito, Pat Mahoney, Tom Fewings, Louise Jefferies & Naomi Harriott-Gayle.
There will also be a children’s Team Tommy group including: Henry Harre, George Williams, Harry Devito, Albert Mahoney, Matthew & Ethan Clark, James & Daniel Alden-Smith, Sam & Billy Wall who will take part in the Mini Mudder, a mile long course of mud and obstacles.
Emma said: “We’re always amazed at the support we receive from our family and friends and we’re so grateful to everyone who continually joins in and helps us raise funds via Fight for Sight. Every parent wants their child to be happy, safe and healthy and be able to live their life as other children their age. Paul and I have a bigger challenge in achieving this for Tommy and would be so grateful if you could sponsor Team Tommy, so Tommy can have a future he can see.”
The Tommy Salisbury Choroideremia Fund celebrates its 10thAnniversary this year and over the past decade has raised a staggering amount of money. By the end of 2015 the family is hoping that they will have collectively raised £500,000. You can help them by donating today. Donate to Team Tommy online or please text TOMM10 £5 to 70070. THANK YOU!
April 2015 - Tee-Off Raises Funds for Team Tommy
On 23 April, fundraisers took part in the annual Tommy Salisbury Choroideremia Fund’s Golf Day raising vital funds to support eye research into choroideremia via Fight FORE Sight.
72 golfers took part in the 18-hole competition and to mark the occasion of St George’s Day participants wore red and white outfits in order to gain an extra stableford point each for their team.
The event organised by Tommy’s mum, Emma Salisbury, and Tommy’s grandmother, Dot, was a complete hole-in-one success, raising £2,150.
Emma said: “Words can’t describe how grateful we are that people are supporting Tommy’s fight for sight. The money raised really does help to make a difference and through supporting Fight for Sight, it helps to get us a step closer to creating a future that Tommy will be able to see. A big thank you to everyone who took part.”
Catherine Woodhead, Director of Fundraising at Fight for Sight added: “Congratulations to Team Tommy once again for holding such a successful event and raising so much for the fund via Fight for Sight. We rely heavily on supporters, like this family, to help fund our projects and we really wouldn’t be able to do it without them.”
If you would like to help support the Tommy Salisbury Choroideremia Fund you can donate by texting TOMM10 £5 to 70070.
April 2015 - Team Tommy Going the Distance
Fundraising siblings Michele Chu, 32, and Louise Chu, 29, from South East London, will join Roger Murphy, 40, from Hayes, and Tara Dennehy, 19, from Chislehurst, to run the Virgin London Marathon on Sunday 26 April.
The trio will go the distance and join thousands of runners taking part in the gruelling 26.2 mile challenge across the capital. They will be running for Tommy Salisbury, 15, from Bexley, who was diagnosed with a sight-threatening inherited condition, called choroideremia, 10 years ago.
The Team Tommy members will be running for Fight for Sight, the UK’s leading charity that funds pioneering eye research to prevent sight loss and treat eye disease. The funds raised by the runners will go specifically to the Tommy Salisbury Choroideremia Fund.
In 2005 Tommy’s mum, Emma, who was recently crowned Tesco’s Mum of the Year for her charity work, and her mum Dot Grindley set up the fund. The family are determined to raise awareness of the condition that affects 1 in 50,000 people, mainly males, and support eye research, so Tommy can have a future he can see.
Their fundraising efforts helped to fund Professor Miguel Seabra research, at Imperial College London. This initial work led to the world-first clinical trial into the condition, led by Professor Robert MacLaren and his team at Oxford University. The trial has already shown positive results in patients and the family hopes that Tommy will benefit in the research one day.
Roger a dedicated member of Team Tommy will also be taking part in the 2015 Tough Mudder event on 2 May said: “Tommy is an inspiration and training for the marathon seems easy compared to what he has experienced. To be diagnosed with a condition where he was told he could lose his sight was devastating for Tommy and his family. Since receiving this news they have done everything they can to raise money to help Fight for Sight. I’m extremely proud to be running the London Marathon for the charity and Team Tommy.”
Michele added: "We’re looking forward to our very first marathon, and it's been such a pleasure to raise money for an amazing charity. The support we’ve received from family, friends and our work colleagues has really moved us. Their support will certainly get us through the 26 miles if nothing else will!”
Catherine Woodhead, Director of Fundraising at Fight for Sight, said: "We would like to wish Team Tommy the best of luck with their training and for choosing to raise awareness and vital funds for the Tommy Salisbury Choroideremia Fund via Fight for Sight.
“A huge thank you to Roger, Michele, Louise plus all of our other runners for taking part in this year's marathon and literally going that extra mile for Fight for Sight. Good luck and we will be there to cheer you on every step of the way."
Apr 2015 - Fighting for Sight for 10 years
To mark the Tommy Salisbury Choroideremia Fund’s 10th anniversary founders Emma Salisbury and her mum Dot Grindley, held a Neil Diamond and Tom Jones tribute night on Friday 27 March.
Mar 2015 - Emma Salisbury is making history
Fight for Sight supporter and Achieving Tesco Mum of the Year Emma Salisbury tells her family’s story in a moving new video.
Mar 2015 - Tommy says thanks in heartfelt letter to mum
Emma Salisbury was awarded Tesco's Achieving Mum of the Year 2015 at the Savoy Hotel on Sunday 1 March, alongside celebrity mums Fearne Cotton and Sara Cox.
The award was in recognition of the outstanding fundraising campaign she has co-ordinated to find a cure for choroideremia, the eye condition inherited by her son, Tommy.
In a heartfelt letter to his mum, Tommy says thanks, for fighting for his sight:
Most people think their mum is the best but not many can say that they've won an award. Congratulations Mum. You really deserve your Achieving Mum of the Year award from 2015 Tesco’s Mum of the Year.
You work so hard and have done so much. I’m glad it’s not just me who notices. If it was up to me you would win an award every year. You have fought for me all my life, supporting me and guiding me, making my world a good place. You always have courage, always fight and always put us kids first.
When I was diagnosed with choroideremia when I was five years old it must have been really tough for you and dad to hear. Especially when your grandad had lost his sight from it. But you've always encouraged me to make the most of my life, and never made me feel different – just loved and I'm grateful for that.
You’ve been on a mission to make others aware of my condition and set up a fund in my name which could help thousands of boys and men. When you and Nanny set up the Tommy Salisbury Choroideremia Fund in 2005, I didn’t really understand what a huge thing you were doing. But since then you’ve been so busy making sure people know about the condition and raising loads of money to help fund eye research to find a cure for me and everyone else who lives with it.
I can’t believe all the things you’ve done - everything from running the London Marathon, being selected to hold the Olympic Torch at the 2012 Olympic Games, hosting coffee mornings or just being someone's shoulder to cry on. I may have made you think I was embarrassed when you dressed up or did something silly to raise money but underneath I have always been so proud of you.
Because of you I have hope that there is a future where I can see and not lose my sight like Grandad, at the moment you give me so much hope that my future will not been any different from it is today and I know you won’t give up until the treatment is ready for me.
All your hard work has led to the really exciting research work at Oxford University it’s great knowing that my family was part of making this happen and that you all did it for me. Thank you for continuing to fight for my sight and for being my Mum. Well done.
Love you always,
To support Tommy’s Fight for Sight please donate by texting TOMM10 £5 to 70070 or call us on 0207 264 3900.
Feb 2015 - Brand design agency donates £500 to fund
The Tommy Salisbury Choroideremia Fund has received £500 from brand design agency, Identica Limited.
Identica’s Managing Director, Carol Lavender, has a close friend who was diagnosed with choroideremia, just like Tommy, and wanted to raise awareness of the condition.
They were also keen to fund research because, as a brand agency, they’re passionate about all things visual and what the world around us looks like - so they appreciate how important vision is.
Instead of spending money on the company’s Christmas card, they decided to donate the money to help fund vital research through the Tommy Salisbury Choroideremia Fund at Fight for Sight.
Thank you to Carol and the team at Identica!
Jan 2015 - Emma Salisbury wins Tesco's 'Achieving Mum of the Year'
A huge congratulations to Fight for Sight’s supporter and mum-of-three, Emma Salisbury, from Welling, Kent who fought off hundreds of mums to scoop the Tesco’s ‘Achieving Mum of Year’ award at the annual event for her incredible charity work.
Nov 2014 - Emma Salisbury shortlisted for Tesco's 'Mum of the Year' Award
Fight for Sight is delighted to announce that Emma Salisbury has been shortlisted for Tesco’s Mum of the Year award for her incredible charity work.
The event ceremony will take place in London, on Sunday 1 March 2015, with award ambassador and celebrity mum Fearne Cotton leading the star-studded event.
The 2015 awards will mark the 10th anniversary of the event, which began as a competition in Tesco magazine in 2006. Since then, they have recognised more than 81 mums and raised the profiles of their charities and causes.
Emma said: “I was absolutely delighted to know that I had been nominated and I felt humbled to have so many nominations. Any mum in my position would do exactly the same. To know Tommy will eventually lose his sight is heart-breaking, so we will do everything we can to prevent this from happening by working with Fight for Sight.”
Fight for Sight CEO, Michele Acton, said: “Emma and family are a force to be reckoned with they are a true inspiration and Emma’s determination and strength is incredible. A huge heart-felt thanks to Emma for all of her support. We are wishing you all the very best and have got everything crossed. Whatever the end result you will always be a winner in our eyes.”
To view Emma Salisbury’s nomination please visit here.
July 2014 - Fundraisers Get Tough to Raise Funds for Eye Research
On Saturday 12 July, dedicated fundraisers from Kent (Welling & Bromley) and Essex took part in the Tough Mudder Midlands raising funds to help vital eye research.
The team consisting of Paul Salisbury, Roger Murphy, Matt Wyatt, Jason Clarke, Ben Perry, George Williams and Vernon Alden-Smith completed the 10-12 miles endurance course. Their main inspiration was Paul's 14-year-old-son, Tommy, who was diagnosed with an inherited condition called Choroideremia.
Paul and family set up the Tommy Salisbury Choroideremia Fund through Fight for Sight, the main UK charity that funds pioneering research to prevent sight loss and treat eye disease, when Tommy was diagnosed in 2005, to support the research work they do into the condition.
The tough mudder is just one of the many hundreds of events that the family and friends have taken part in to raise money. To date the family has raised over £390k and all their hard work helped to fund initial research at Imperial College London, which enabled the world's first cell replacement therapy at Oxford University to take place.
Paul said: "It's humbling to know that after all these years of fundraising we have friends and family who continue to support us. We have met many people along the way who are all desperately wanting a cure to be found for Tommy and everyone else who lives with the condition."
Julian Jackson, Director of Development at Fight for Sight said: “The Tommy Salisbury Choroideremia Fund supporters are truly inspirational. There is no stopping them with their fundraising. A huge thank you yet again for all their efforts and hard work they put into supporting Choroideremia research.”
To donate to the team please visit www.justgiving.com/TeamTommy2014
July 2014 - 10th Annual Coffee Morning for Tommy Salisbury raises £1500
On the 5 July 2014 Emma Salisbury and Dot Grindley held their 10th annual coffee morning for 80 ladies to raise vital funds for the Tommy Salisbury Choroideremia Fund via Fight for Sight.
The torrential rain stopped just in time for the stalls to be put up in the garden to exhibit the hand-painted cards, the beautifully made cushions, plus homemade chutney and many other goodies. All the cakes were homemade with love and not a crumb was left over. There was a wonderful raffle with many items being donated by friends as well as local shops.
Dot said: “Thank you yet again to all the ladies for their continuous support in coming to the coffee morning. It’s such a lovely way to catch up with everybody to let them know how the research is going, as well as thanking them for making it all possible.”
June 2014 - £1,075 raised for Choroideremia research
On Saturday 28 June, over 50 golfers teed off to raise money to support Choroideremia research projects funded through Fight for Sight.
The event was held at the Burstead Golf Club, Essex, and was organised by 42-year-old Paul McGuire, who was diagnosed with Choroideremia in March 2013.
Paul was absolutely delighted with the funds raised. He said: “I would like to thank everyone who participated and for their generosity, on what was an extremely successful day. Not only did all of the golfers enjoy themselves, but the funds raised will go towards research into Choroideremia, via the Tommy Salisbury fund, which I am extremely grateful for.”
Paul is hoping he will be able to be involved in future trials given the positive results from Professor Robert MacLaren’s research carried out at Oxford University. The results of the trial were published in The Lancet in January this year.
June 2014 - Hats off to the fundraiser mother who wears her hat with pride
Emma Salisbury, from Welling, Kent, attended Ascot races, along with six friends, all wearing a hat with a difference on Thursday 19 June.
Emma, the force behind the Tommy Salisbury Choroideremia Fund, got the hats especially designed to represent an eye. The friends had a great day out while raising vital awareness – and turning more than a few heads.
“It was one of my friends, Jane, who came up with the idea. We thought it would be quite nice to go and get noticed. It’s just to really raise the profile of Fight for Sight. We are so pleased with them!”
In 2005 Tommy, aged five, was diagnosed Choroideremia, a rare inherited retinal condition, which affects one in 50,000 people. This can lead to progressive loss of vision. There is currently no cure.
Following his diagnosis the family established the Tommy Salisbury Choroideremia Fund through Fight for Sight, the main UK charity that funds pioneering eye research to prevent sight loss and treat eye disease. Led by Emma and her mother Dot Grindley, the family has tirelessly raised over £360k to date which directly supported research led by Professor Miguel Seabra at Imperial College London.
Without the funds from the family this initial research wouldn’t have been able to take place. It led Professor Robert MacLaren, at Oxford University, to carry out the world’s first gene-replacement clinical trial for Choroideremia. The trial has already shown promising results and Emma is keen to raise awareness at every opportunity.
Apr 2014 - Golf day raises £2,000
On Thursday 24 April over 70 supporters helped to celebrate the Tommy Salisbury Choroideremia Fund’s Golf Day.
The 9th annual fundraising event took place at Shooters Hill Golf Club, South London, and raised £2,000 to help fund Choroideremia research projects through Fight for Sight.
There was a league table and prizes for the best golfers on the day including:
- Dean White taking first prize (with 45 points)
- Paul Salisbury (Tommy’s Dad) won the second prize (with 41 points)
- Carol Stowe was the leading lady and she won first place for the female team (with 35 points).
Tommy’s grandparents, Dot and Alan, and Tommy’s parents, Paul and Emma organise the event annually and were delighted that it was such a success: “We wanted to say a huge thank you to everybody who came and supported the event. It never ceases to amaze us just how generous people are in helping us to support the vital research work that Fight for Sight does.”
Mar 2014 - Salisbury family are tested to the limits in mud run challenge
Tommy and Emma Salisbury along with their battalion of 36 fought their way through a medley of obstacles, and a healthy amount of mud, to complete the Back 2 the Trenches event on Sunday March 23.
The team, raising money for Fight for Sight, endured mud slides, deep water, fire and even an electric fence! Thankfully all members survived unscathed and returned having loved every minute.
Back 2 the Trenches assault courses run throughout the year and aim to test your physical and mental toughness to the limit. The runs are over varying terrain and suitable for all ages and ability.
What’s more, all ‘Team Fight for Sight’ runners will receive a 15% discount on event registrations – just enter FFSIGHT14 when you register. There is no minimum sponsorship for this event – just raise what you can to help us make sight loss a thing of the past.
We’ll support you every (muddy) step of the way with an event fundraising pack, training vests and meet and great on the day of the event.
Register online here or contact Laura on 020 7264 3914 for more information.
More information about Back 2 The Trenches can be found here: http://www.back2thetrenches.co.uk/ and join in on Facebook https://www.facebook.com/events/234688986718188/
Feb 2014 - Dedicated Kent Family Raise Thousands at Charity Fundraiser Night
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.
Jan 2014 - Success in World’s First Choroideremia Trial
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.
Choroideremia clinical trials
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."
Sept 2013 - Team Tommy takes on world's largest junior triathalon
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.
July 2013 - Dedicated Gran fundraises for Choroideremia
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.”
Mar 2013 - Tommy Salisbury appointed a Fight for Sight Patron
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.”
Mar 2013 - Food Glorious Food!
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!
Feb 2013 - Valentine's Day Gala
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.'
Nov 2012 - Spartan Beasts Challenge!
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.
Oct 2012 - A team of 60 runners 'Run to the Beat' for Tommy Salisbury
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.
July 2012 - Emma Salisbury's Olympic Torch
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.
July 2012 - Coffee morning for choroideremia raises over £2,000
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.
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