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Ian Treherne Photography Exhibition

On Wednesday evening I attended a fantastic photographic exhibition in London which displayed the work of Ian Treherne.
Ian has Usher Syndrome, and recently appeared on Channel 4’s Undatables where he spoke about his condition and tried to find love! Having spoken to Ian since his appearance on the programme, he has so far been unlucky in finding a girlfriend, but has been very successful at raising awareness of his condition and the challenges he faces.

His exhibition is a mixture of portraits and landscape pieces, and his incredible use of lighting really gives an intimate feel to each photograph. He is a true artist, and hopes to inspire other visually impaired people to follow their dreams.

Ian’s exhibition is on until 10th March at Fiumano Projects, Unit 12, 21 Wren Street, London, WC1X 0HF. You can see examples of his work on his website https://iantreherne.co.uk/

Emily Purchase
Challenge Events Coordinator

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England Vision Strategy National Conference

I recently attended the England Vision Strategy National Conference in London. Organised by the England Vision Strategy Team this was the second National Conference and it was held at the BMA Building in Euston. The conference discussed key issues relating to eye health and sight loss as well as giving presentations about the findings of the UK Vision Strategy evaluation.

It also covered the progress that has been made in England and what needs to be done to ensure the England Vision Strategy is successful and effective for the benefit of all those living with and at risk of sight loss.

Expert speakers attended from across the sight loss sector including health, local authority and the third sector including John Thompson, Co-Chair of the England Vision Strategy, Eleanor Southwood, Vice-Chair of RNIB Group, Keith Valentine, Deputy CEO of Thomas Pocklington Trust and Alison Oliver of Visionary among others.

It was great to hear updates of the success of the UK Vision Strategy and to take learnings from those outcomes. The main message being that the sector needs to collaborate more and work effectively together to make actual change.

Tina Houlihan
Chief Executive

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Jessie Mole Memorial Lecture, Oxford


Yesterday I attended the Jessie Mole Memorial Lecture, with Tina Houlihan our Chief Executive, trustee Lucy Withington and RPFB’s founder and Honorary President Lynda Cantor. Don Grocott, Chairman of the Board of Trustees was also in attendance, and introduced the lecture which was delivered by Professor Alison Hardcastle of UCL. The lecture was incorporated into the Oxford Ophthalmology Updates Day, a professionals event held annually.

Jessie Mole was a very important figure in the early days of the organisation. In April 1975 she wrote the Deed of Trust for the charity, then the British Retinitis Pigmentosa Society, which was founded by her niece Lynda Cantor. She worked tirelessly for the charity, serving as Treasurer, Chairman of the Management Committee and then Chairman of the Board of Trustees. Jessie died on 24 March 2000 and The Jessie Mole Lecture was inaugurated on 10 December 2001, in recognition of her outstanding contribution to the charity.

This year’s lecture, which was the final session of the day, was entitled ‘Genetics of Retinal Dystrophies and Patient Stem Cell Models to test Potential Therapies’.

Professor Alison Hardcastle described discoveries in her laboratory that have revealed unusual genetic mechanisms leading to X-linked forms of retinal degeneration, and updated delegates on recent progress of the UK Inherited Retinal Dystrophy Consortium to identify the missing genes. Professor Hardcastle also highlight recent research from her team and collaborators that has revolutionised the way researchers study these conditions.

It was a very enjoyable event and we were delighted Professor Hardcastle consented to deliver the lecture. She was presented with a commemorative medal to mark the occasion.

Thomas O’Neill
Communications Manager

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Santa Run, London

img_2175Team RP really got into the Christmas spirit this weekend at the biggest Santa Run in London! They joined nearly 3000 Santas to take part in a 5k or 10k fun run around Victoria Park in the beautiful winter sunshine.

The atmosphere in the park was amazing, with every single person taking part having raised money for their chosen charity, and all wearing the fantastic Santa costumes which were provided free for all participants. Even those not running dressed up, including quite a few dogs wearing Christmas jumpers and Santa hats!

There was a lot going on in the race village, with carol singers, Christmas characters (including a snowman and reindeer!), a Santa’s Grotto and Christmas themed photo booth. After the carol singers had finished their songs, there was a big warm up. Seeing the thousands of Santas all jumping and dancing around together was an incredible sight! Then it was off to the start line and the run began!

All of the Team RP runners did really well, each completing the run and having a great time! Many of them expressed the wish to take part again next year, and I can’t wait to see them again at future events! Thank you to all who took part and raised money for RP Fighting Blindness and Merry Christmas!

Like the sound of the Santa Run but missed out on a place? The Superhero Run is coming to London’s Regent Park on 14th May 2017! To receive an information pack, please get in touch with me on 01280 821334 or email Emily@rpfightingblindness.org.uk.

Emily Purchase
Fundraising Assistant

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Partnering for Cures Conference, New York

partneringTowards the end of November I represented RP Fighting Blindness at the Partnering for Cures Conference in New York. This annual global gathering brings together medical research funders, partners and organisations to share best practice with the aim of speeding up finding cures and cures for many different conditions.

Among others, the presentation subjects included collecting patient data, patient engagement and how to communicate with researchers. The delegates heard from a whole host of different experts and sector leaders and had the chance to ask questions and share experiences. Other charities of a similar size to RPFB were in attendance and it was an excellent opportunity to learn how other comparable organisations operated in research and patient engagement.

I got to meet with some representatives from some of our international counterparts, notably Foundation Fighting Blindness, and shared ideas about future partnerships.

A London event is planned for 2017 and I very much look forward to meeting our global partners again next year.

Tina Houlihan
Chief Executive

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Get Safe Online Day, Oxfordshire


Earlier this week I attended a free event held by Thames Valley Police in Didoct, aimed at small to medium sized organisations about how to improve online security.

Various speakers presented, including members of the Thames Valley Police Service, cyber security industry and financial fraud experts and professional computer hackers.

During a workshop session the weaknesses of wireless networks were demonstrated, and we were shown how password decryption software worked. We were also warned about common online scams and how to avoid them.

We were given an overview of cybercrime at a local, national and international level, and advice given about how to react to rouge software such as ransomware being downloaded on our system.

A question and answer session at the end of the day allowed delegates to pose specific queries, and they ranged from telephone and cheque fraud, to the security of online payment systems.

We’d like to thank Thames Valley Police, and all the speakers who gave their time; it was a very informative day and we found it helpful and interesting.

Thomas O’Neill
Communications Manager


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Worksop’s Got Talent

group-shotOn Friday 11th November, over 600 people came together for an evening of entertainment at Worksop’s Got Talent. Organised by community fundraiser James Clarke, this fantastic event showcased local talent whilst raising incredible funds for RP Fighting Blindness.

James Clarke has RP himself, and last year he was told that he was no longer allowed to drive. James was initially devastated, but decided to use his condition as a positive and undertook a year of fundraising, which culminated in Friday’s event. He promoted the event very thoroughly and effectively which was proved with the ticket sales. Not only did he advertise online and in local newspapers, but he was also featured on both Trax FM radio and Notts TV.

The event was hosted by ITV Calendar News reporter James Webster who started off the evening by introducing the talent show judges; Footballing sensation and Sheffield Wednesday star Liam Palmer, Angela Norwood-Pearson who was representing North Notts College, and businessman, model and “Celebrity Big Brother” winner James Hill.

There were 10 acts which had made it through the tough audition process to perform on the night which included musical theatre singers, magicians, rappers and dancers. With the chance of becoming Worksop’s Got Talent’s first ever winner, receiving a trophy and £100 Amazon voucher as well as the chance to perform at the Worksop’s Christmas Light Switch on event, all of the acts really pulled out all the stops with their performances.

As well as the finalists, there were other performances through the evening from Worksop Community Gospel Choir and a special and memorable performance of the Full Monty by North Notts College employees! Raffle tickets were on sale throughout the evening, with prizes including a signed Coronation Street costume, tickets to watch Ant & Dec’s Saturday Night Takeaway, a £150 pair of designer sunglasses and many more! The raffle itself raised over £1000!

The winner of Worksop’s Got Talent was Verity Lee-Varley who sang a mesmerising rendition of Memories from the musical CATS, and all the judges agreed that she had a truly captivating voice. In second places was Koda, who performed an incredible rap that he had composed himself, and in third place were James and Paige Airey, a brother and sister dance duo. The top three all received standing ovations from the judges, and all three will be performing at the Worksop Christmas Light switch on event.

James has so far raised £5,850 for RP Fighting Blindness, and hopes to reach £6,000 with sales of DVDs of the show. If you are interested in buying a DVD, please contact James by emailing jamesc@worksopsgottalent.co.uk.

Thank you so much James for your passion and commitment to making this event amazing. Worksop’s Got Talent will return on 10th November 2017, so put the date in your diary now!

Emily Purchase
Fundraising Assistant

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Moorfields World Sight Day!

121Thursday the 13th saw us return again to Moorfields Eye Hospital in London for World Sight Day. It was an early start to the day, with the event starting at 8.30am and finishing at 3pm. Along with other charities, which included RNIB, Action of for Blind People, Macular Society, International Glaucoma Association, and Moorfields Eye Charity, we spent time meeting and talking to patients and staff to inform of them of the work of our organisations and the different eye conditions we represent. We were able to provide people with contact information and literature to disseminate more widely.

The exhibition stands are set up in the main corridor, just beyond the main entrance to Moorfields, so you can imagine how many people pass by our stands throughout the day. It’s a great opportunity to engage with many people who are either working at the hospital or are there to attend eye clinic appointments.

It was an informative day which everyone enjoyed, and as always a great networking opportunity to connect each year with colleagues from other VI charities and to find out about the work they are currently doing and how we can share ideas and support one another.

If invited, I’m sure that RPFB will be present again at Moorfields World Sight Day event in October 2017. Look out for dates nearer the time!

Sue Drew
Engagement Manager

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Sight Village Leeds

untitled12Yesterday, the RPFB engagement team attended Sight Village which was held at the impressive Royal Armouries in Leeds.

During the morning Denise and I met and spoke to lots of people, many of whom are living with an inherited retinal dystrophy such as RP, or Usher syndrome. We were able to tell people about our services, provide information and simply catch up with some of RPFB’s long term members.  We were also able to make connections with many health and social care professionals, in particular local sensory support teams and teachers.

In the afternoon we held our final RP Seminar of the year in the tower gallery on the third floor of the venue; there were 40 people in attendance, which was maximum capacity for the venue.

We had an exciting agenda for the afternoon, with Mr Kamron Khan, providing a talk on inherited retinal dystrophies and genetic management / testing. Mr Khan is a Consultant Ophthalmologist with a special interest in inherited eye conditions and works both at St James’s hospital Leeds and Moorfields Eye Hospital in London. We were therefore very grateful that he found the time to, at short notice, to come along and talk to us and answer questions.

During the Q&A session we had questions around research and the potential for treatments, genetic testing the risks of inheritance and low vision aids, to name but a few. A very important question was raised by someone in the audience about stem cell treatments abroad, which we hear about more and more frequently at RPFB. Mr Khan was able to explain the risks of unregulated stem cell therapies and their potential effectiveness. These types of treatments are both costly, and have no research papers published to evidence their effects, either beneficial or detrimental. In the UK we have very strict ethical guidelines governing medical research and treatments, but this is not necessarily the case in every country.

Mr Khan’s talk was followed by a presentation from Dr William Rhys Jones.  Dr Jones is a Consultant Psychiatrist in Leeds, and he gave us an inspirational talk on inherited sight loss from a doctor’s perspective. The twist being that Dr Jones has a cone/rod dystrophy himself and he gave us a warm, funny and emotional insight into his diagnosis, childhood and his decision to choose medicine as a career.  He spoke of his journey through medical school, and some of the difficulties his vision caused, how he overcame any obstacles, and the way he is able to use his own personal experience when working with his patients in clinic.

As well as our two wonderful speakers, Denise and I were able to offer additional information and support and we’ve been able to follow up after the event with information on referrals to specialists and genetic clinics.

The Leeds seminar concluded our programme of Patient Information Days and seminars for the year, but we are currently working on plans for events in 2017 and we’ll be announcing the details once we have confirmed dates and locations.

I’ll be attending the World Sight Day event at Moorfields Eye Hospital in London on the 13th October, and the engagement team will be at Sight Village London at Kensington Town Hall 1st – 2nd November.

If you are attending either event, please do come along and say hello to the team!

Sue Drew
Engagement Manager

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Aberdeen RP Patient Information Day

apidLast Thursday saw our Patient Information Day programme draw to a close for another year.  Sue Drew, Tom O’Neill and I boarded a plane and try as it might, the fog, closed runways and delays couldn’t stop us arriving in our most northerly location yet, Aberdeen.  The friendly welcome at our venue for the event, the Aberdeen Altens Hotel, soon eased away the stresses of the journey.

It was lovely to meet the team from North East Sensory Services (NESS) who offered lots of support throughout the day as well as their Chief Executive, Graham Findlay opening the event and giving the first presentation about local support services.

This was followed by a talk from Dr. Alison Ross, a Consultant Clinical Geneticist in Aberdeen about the genetics of inherited retinal dystrophies.  The audience then had the opportunity to hear from Dr Carla Mellough and Dr Joseph Collin, Research Associates from the Institute of Genetic Medicine at Newcastle University about the latest Stem Cell research.

The presentations were followed by a ‘sofa session’ which comprised of an informal discussion between, Colin Hetherington, a patient with Ushers and Graham Findlay from NESS who has RP, about diagnosis and coming to terms with living with RP. The last part of the day consisted of a question and answer session, allowing the audience to put their own questions and observations to the panel of expert speakers.

As well as Sue, Tom and me being there to offer information and support to those who attended, assistance was also provided by a team of volunteers from NESS who acted as sighted guides for the day and helped out with lunch and refreshments. They really helped the day to run smoothly.

The day was well attended with over 75 coming together to find out more about living with inherited retinal dystrophies.  For those who weren’t able to attend, an audio recording of the day will allow you to hear the presentations.  This will be made available on the RP Fighting Blindness website within the next two weeks.

We’ll be announcing details of next year’s Patient Information Days once we have confirmed dates and locations.

Denise Rawden
Outreach Officer

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