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Jessie Mole Memorial Lecture

Yesterday I attended the Jessie Mole Memorial Lecture in Oxford with Don Grocott, RPFB’s Chairman and RPFB trustees Roger Backhouse and Lucy Withington. This year’s lecture was delivered by Prof Chris Inglehearn, who has worked with the charity for many years. The lecture was incorporated into the Oxford Ophthalmology Updates Day, a sight loss 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.

Prof Inglehearn’s lecture was entitled ‘Retinal Diseases and the prospect for therapy in the genome era’. It covered some of the biggest advances in genomics and paid tribute to those who have done so much to further our cause and build scientific understanding of inherited retinal dystrophies.

As is tradition, Prof Inglehearn was presented with a commemorative medal to make the occasion. Huge thanks must go to Prof Susan Downes who organised the day, and of course to Prof Inglehearn for consenting to deliver this important lecture.

Thomas O’Neill
Communications & PR Manager

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Calibre Audio Library

Last week I had the pleasure of meeting with three of the team from Calibre Audio Library on a bright and sunny Thursday morning in Buckinghamshire. Calibre Audio Library is a registered charity for people who struggle to read print either through sight problems, dyslexia or physical disabilities.

On arrival, Events & Communications Officer James Beston kindly showed me around their purpose built library. I was overwhelmed by the size of the operation! There were rows and rows of shelves stacked with discs and USB sticks, all waiting to go out to tell their own story with over 10,000 titles included. Volunteers and staff working side by side to receive the returned copies and send out the new ones to members within the same day. Shelves of reading books, both fiction and non-fiction, waiting to be converted to an audio file. They clearly take quality very seriously, with all of the books read by actors and voice over artists, all giving their time voluntarily. I understand there is even an audition process!

There was a mini-studio where they are able to record their newsletter and other pieces in house, and pieces of technology that were beyond my comprehension but ensured that the quality of the readings were top-notch.

What I really liked about Calibre? That they state they are from ages 5-105, it is so inclusive and contains such a wide variety of materials for you to absorb. Being an Agatha Christie fan, I was not surprised to hear that murder mystery and crime thrillers were their current most popular category. If that isn’t yours, don’t worry there are thousands of others for you to request, and they will take recommendations for books from their members too.

After my tour I was invited to sit with James, Liz Clarke, Head of Fundraising & Marketing and Faye McClenahan, Marketing Consultant to talk about ways in which we can support each other to have the greatest impact for our members and communities. Some of you may be aware that Calibre has joined us at our Annual Conference and will be exhibiting this year too. I am thrilled that our partnership can continue and I am keen to see how we can support each other further.

Thanks to James, Liz and Faye for being so welcoming and informative in my time with Calibre.

Laura Conway
Partnerships & Philanthropy Manager

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Northern Alliance Group meeting, Newcastle

This Saturday just gone I headed north and, after experiencing all weather types in one morning, I arrived in Newcastle for the Northern Alliance Group meeting. After a warm welcome from group leader Colin Hetherington and his partner Lynn we settled down with around thirty other members all of whom are living with an inherited sight loss condition.

As well as me, there were also representatives from RNIB, Guide Dogs and local sight loss organisations giving a breadth of information on PIP, universal credits other initiatives and the RNIB’s plans for the future.

It seems that the RNIB’s plans to pull back from direct services into a more remote and campaigning role is causing some concern amongst the sight loss community, and with a nine month waiting list for long cane training it is easy to see why this is. The RNIB, once the beacon of hope and immediate contact for those with sight loss, seems to be in jeopardy and it is yet to be seen if the campaigning, helpline and online RNIB Connect services will fill this gap. Once a provider of hands on rehab and training the RNIB must have said a dozen times it is the legal obligation of the local council to provide these services; little comfort for the community that support the organisation to the tune of over a £100 million per annum and in an era of extreme shortage’s in public funding. There is a real sense of a higher expectation of the RNIB and I hope the organisation’s restructure can develop to meet these.

As a Chief Executive of a small, condition-specific organisation the way we support our community in the most efficient way is always high on our agenda. On a relatively small budget it is essential we fill the gaps left behind by our big brothers in the sector without adding confusion or ‘reinventing the wheel’. Our recent research into how we may best support people with a diagnosis (at any stage in their physical symptoms) to future-proof their careers is an example of how we are trying to do that.

Arguably more important is that we as the charity ‘belong’ to the people we are serving, not sitting slightly elevated, preaching what is best. With this has to come a commitment by the executive and the trustees to be a tool of the community’s policy whilst running the charity as a thriving business for good.

In this time of real uncertainty of charitable transparency and best practice; and closer to home, one where bringing treatments to a reality for the first time is within our grasp; I am committing to listening, including and acting on what my community tell me is needed. So please get in touch, let me know your thoughts and where possible I will implement and where it is not I will tell you.

Let’s become the rock-solid community, voice and real agents of change we need to be in these cynical and challenging times.

Tina Houlihan
Chief Executive

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RP London Spring Social

On Saturday 10th March I attended the RP London Spring Social, organised by RP Fighting Blindness Trustee, Rachael Stevens.

The event started at 3pm at The Hydrant, where the group had the whole of the mezzanine area of the pub to themselves. As people started to arrive they were greeted to a warm welcome from Rachael, and introduced to the other people there. Most people sat around a large table, chatting about their lives, their involvement with the group, and their experience of living with sight loss. Everyone was very excited for the special guest, stand-up comedian Chris McCausland.

As the tables became fuller and it seemed everyone had arrived, Rachael took to the microphone to welcome everyone again, and introduced herself. She then handed the microphone round to each person so that we all knew who everyone was.

Chris was running a little late due to trouble getting through London but nobody really minded. The mood in the room was positive as people talked some more and learnt more about each other.

When Chris arrived he was met with applause from all, and he soon had everyone laughing as he performed. Chris has RP himself, and told us some hilarious stories from his life, including anecdotes involving his loss of vision.

After he had performed there was a question and answer session, where he talked about his journey from his first stand-up gig to becoming a professional comedian to performing on Live at the Apollo! He also gave some advice on other aspects of life such as the practicalities of raising small children when you have a sight loss condition.

Thank you so much to Chris for your inspiring and hilarious talk, to Rachael for organising the event and to everyone who attended. I would highly recommend going to the next event planned. Keep an eye on social media to find out the details!

Emily Webb
Fundraising Events Manager

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The UK Genetics Disorders Leadership Symposium

I was privileged to attend the UK Genetics Disorders Leadership Symposium this past weekend, meeting with people from organisations working right across the genetics, research and charity sectors.

Held at the Amber Hotel in Charing Cross, this two day event brings together a plethora of charity representatives, healthcare workers and patients with a professional interest in genetics. The evening dinner guest speaker was Samantha Renke, award-winning actress and disability campaigner, who gave an overview of her motivations and career, with good humour and great personal insight.

Speaker topics ranged from disability law, the availability of genetics testing, decision making processes in the NHS, the impact of Brexit on scientific research and effective charity communications, among many others. I was pleased to meet Chloe Joyner, advocate for Usher syndrome community with whom we’ve worked, at the event. We also learnt about the advances in genetics understanding since the last symposium, and breakthroughs made.

A key aspect of the symposium each year is to ensure all the delegates get to speak with one another, share best practice and learn from one another. It was great to speak with representatives from other charities who work in different areas of scientific research and patient support, but face the same challenges.

We’d like to say a big thank you to everyone at Genetics Disorders UK who helped deliver this event, and the fantastic speakers who gave their time to present to us. We very much look forward to next year’s event.

Thomas O’Neill
Communications & PR Manager

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England Vision Strategy meeting

On Wednesday, I attended my first England Vision Strategy (EVS) meeting for Yorkshire & Humberside Region.  It was an excellent opportunity for sight loss professionals and support organisations to come together and contribute to practical solutions to local issues regarding eye health and sight loss.

We heard from some great speakers and it was encouraging to hear the commitment to collaborative working and the importance of building partnerships within the sector in order to better support people living with sight loss.  It was an interesting and informative afternoon and provided a great networking opportunity to hear what was happening around the Yorkshire and Humberside areas and to spread the word about RP Fighting Blindness.

Denise Rawden
Regional Service Manager – North West & Northern Ireland

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Big Half Marathon, London

Sunday 4th March saw the first ever Vitality Big Half in London, spanning 13.1 miles. Over 15,000 runners descended on the city, eager to beat personal bests and challenge themselves.

Despite the Beast from the East, 14 amazing and dedicated runners took part for RP Fighting Blindness, all of whom did really well both in terms of their finishing times and their fundraising.

Fellow fundraising team member, Laura Conway and I attended the event on the day and set up in the Charity Village. We were pleased to be able to offer our runners a hot or cold drink, biscuits and sweets after the run, which were very much appreciated! We also had the opportunity to thank them in person for all their support of the charity and to talk to them about how they had found the run. As well as this we had a table full of our leaflets, pens and wristbands which gave us the opportunity to spread the word about RP Fighting Blindness.

Alongside the Charity Village was the Big Festival, which included food and drink from around the world, musical acts on two stages and some fairground rides. Despite the cold, many people were enjoying what was on offer, before flooding into the local pubs!

A huge thank you goes to our amazing runners! I know a lot of them are continuing to fundraise for RP Fighting Blindness, and it is fantastic that every single one of them took part in the run despite the snow. So far they have raised over £4,000 for the charity, which is an incredible achievement!

Emily Webb
Fundraising Events Manager

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Retina International World Congress

In February I went to New Zealand to attend the Retina International Global Conference. First on the agenda is the grandly title General Assembly where all of our international partners (and Retina International members) worked through the governance of running this international organisation. More than this is the opportunity to meet with our counterparts and catch up with new developments, faces and indeed member organisations. This is a fantastic opportunity to build alliances, collaborations and pick up great ideas from all over the world as well as having an opportunity to develop this umbrella organisation that ties us all together.

The following day incorporates an opportunity to learn more about progress all over the world in the aptly named Continuous Education Programme. As well as learning about new programs in patient involvement and clinical trials all over the world, we in the UK also had the opportunity to share our aspirations. Those aspirations include building evidence about the inherited sight loss community so we cannot only be providing support and information effectively but also have the statistics needed to advocate more effectively as treatments come to market… essential to our work over the next few years as treatments become a reality and politics take over.

And then on with the scientific and public days of the conference. So what are the top lines?  More genes have been discovered – well over 260 now, and that is great news! Equally as important is the fact that treatments for specific genes and their defects are now coming through the scientific and clinical process with Chroideremia, XLRp, Acromatopsia, Retinoschisis,Usher Syndrome, Stargart Disease, LCA and LHON gene therapies now all being in clinical trials. All good work, but the big news was the recent FDA approval of Luxturna, a gene therapy for RPE65 gene (which causes LCA) – the first gene therapy for any condition to get approval. Although this was a big success it raised many questions around the pricing of the therapy and the evidence required to get the treatment to the patient; something we will be picking up on in the next few months. As patient groups this was a major breakthrough and takes us further toward our goal of treatments and cures for all.

In addition to all this great scientific advancement was a fabulous youth event, which saw 50+ young people take in adventures, sports and activities and attending the scientific conference (as well reporting on their shenanigans, please let me know if anyone wishes to get involved in the RI youth programme and I will forward contact details), the opportunity to experience Maui culture and a real-life Haka (and yes it is very intimidating!) and a number of empowerment sessions. These  sessions were particularly interesting as it showcased how people with sight loss had lived truly inspirational lives; covering everything from travel tips, to career tips and very poignantly parenting tips for those with visually impaired children. This new addition to the conference added a much needed human story to the scientific proceedings.

Rest assured that we in the UK are part of a fantastic international movement and under the new executive leadership of the wonderful Avril Daly, Retina International is continuing to be a leading light for our community and is tirelessly working towards great cohesion. The stand-out message is that the patient-groups need to start coming together to gather evidence and campaign effectively; our job has fundamentally developed from basic research funding to fearless, coherent campaigners – all so we can enable treatments to become a widespread reality.

Tina Houlihan
Chief Executive

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Visit to Dr Mariya Moosajee, London

Earlier this month, the fundraising team went down to London to visit Dr Mariya Moosajee at the Institute of Ophthalmology for a lecture on inherited retinal dystrophies (IRDs).

Mariya had kindly written the lecture specifically for us, as a way to understand the different conditions, inheritance patterns and what causes the loss of vision.

She started with the basics by describing the structure of the eye and what the different parts do, before going into more detail about the retina. She described how the cones in the retina detect colours and detail, and the rods detect motion and help people see in dim lighting. There are a higher proportion of cones in the macular (central vision) which is why a lot of people with an inherited retinal condition maintain their central vision. In this case, the rods are the cells which are affected, which is why a lot of people experience problems seeing in the dark and the loss of peripheral vision first.

Mariya then went on to discuss genetics, explaining that a change in your genetic code results in a deficient, defective or dysfunctional protein which means the cells aren’t able to function correctly and so they die off. This is retinal degeneration.

After describing the symptoms of IRDs and the different inheritance patterns, Mariya talked to us about the different types of research projects that are currently in progress, including gene therapy, stem cells and non-viral gene therapy.

Mariya and her team are trying to get people to have a genetic diagnosis rather than a phenotype diagnosis (eg RP, Usher syndrome, LCA). Lots of conditions can look similar, and yet require different treatment.

By moving to talking about diagnosis as a genotype, people are less likely to miss out on effective trials and information and we can better understand what the prevalence is for each case.

Thank you so much to Mariya for taking the time to teach us this important information and giving us an insight into the world of researching inherited retinal dystrophies.

Emily Webb
Fundraising Events Manager

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RPFB Ambassador Meeting, London

Yesterday I had the pleasure of meeting with RPFB’s Ambassador, Bhavini Makwana. The Ambassador role is a voluntary one, and is held by someone with a strong interest in supporting our work, an understanding of  fundraising and excellent communication skills.

Bhavini joined the organisation as an Ambassador in 2016 following a long association with our work, and has run a number of events ranging from interactive workshops to charity dinners. She works with the charity South East London Vision (SELVIS) and set up her own group for support and socialisation called SocialEyes.

We met to discuss her planned activity for 2018 around awareness and fundraising, and in turn I updated her about how certain RPFB projects such as the successful Working Age Group Project were progressing. Bhavini already has her first event of the year arranged; a VI Dance Class for Beginners – you can learn more about this on our website https://www.rpfightingblindness.org.uk/newsevent.php?tln=newsevents&newseventid=631

2018 looks set to be an exciting year, and we’re looking forward to helping Bhavini as she prepares for her fantastic events!

Thomas O’Neill
Communications & PR Manager

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