Look Forward issue 162 - August 2017

Look Forward Issue 162

August 2017 Registered Charity No.1153851

Inside Services Department Page 4 Research Updates Page 6 Anniversary Rose Page 8 Worldwide Walk Page 10

Exciting times ahead for RPFB

Annual Conference Success Page 12

RP Fighting Blindness has enjoyed a busy and productive first half of the year, with a fantastic new look annual conference taking place, the successful Families Conference running in May and the Helpline Volunteer Training Weekend taking place last month. The charity is moving ahead with a number of exciting initiatives including the Working Age Group Project, and we’re redeveloping our services provision, more about which you can learn in this issue of Look Forward. We’ve welcomed a new member to the fundraising team at head office and have attended Sight Village events in Scotland and Birmingham. The remainder of 2017 looks set to be just as busy, and we’re excited for what lies ahead!

Working Age Group Project Update Page 14 Retina International Congress Page 15 Family Funds Page 18 Staff Updates Page 19 Be My Eyes App Page 22

NEWS

Letter from the Chief Executive Tina Houlihan I hope this latest issue of Look Forward finds you well. I’m delighted to report we’ve had a great year so far with the head office team working hard to put on events, fundraising and representing us in the sector.

In this issue you can learn more about our research, some of the staffing changes at head office and upcoming events. We’ve committed more than ever this year to funding research and improving our services, so please do check out our website and explore the different ways you can support us.

Please do feel free to email me at chiefexecutive@rpfightingblindness.org.uk; all feedback and comments are welcome.

I’d like to take this opportunity to thank our wonderful Helpline volunteers, who recently met in Milton Keynes to undergo their Thank you for your ongoing support. annual training; these people are the backbone of our support services, offering guidance and advice to those affected by inherited progressive sight loss.

They are often the first port of call Do you follow us for those recently diagnosed and on Facebook and the importance of the work they do Twitter? Search for on our behalf cannot be RP Fighting Blindness on Facebook underestimated. I met with them at to find our Page and various groups, this year’s training weekend and and follow us on Twitter on continue to be humbled by their @RPFightingBlind for the latest dedication, professionalism and updates and news about the charity. care for our community.

RP Fighting Blindness funds medical research into inherited retinal dystrophies and offers a range of information and support services to patients and their families.

PO Box 350 Buckingham, MK18 1GZ E: info@rpfightingblindness.org.uk T: 01280 821334 (OFFICE) T: 0845 123 2354 (HELPLINE)

FUNDRAISING

Virgin Money London Marathon post-race reception by the fundraising team, friends and family, and were treated to welldeserved sports massages from Hannah Kenny from Body2Go and RPFB supporter Liz Pimperton, plus showers and a buffet. The atmosphere at the post-race The 2017 Virgin Money London reception was amazing, with Marathon was once again a huge success with 16 runners fundraising everyone cheering each time another runner returned from the for RP Fighting Blindness. race.

Every single runner finished the marathon with fantastic times; a great achievement! They were greeted at the Taj Hotel for the

Next year’s marathon will take place on Sunday 22nd April 2018 and we have 19 places available for next year. Join Team RP today!

Marathon course in reverse and finish by The Cutty Sark in Greenwich.

The Big Half is a brand new half marathon in London organised by the creators of the Virgin Money London Marathon, and we have 45 places for Team RP runners!

It will start adjacent to Tower Bridge, follow much of the London

Taking place on Sunday 4th March 2018, it also features a fantastic festival with food from around the world, music and other entertainment for the whole family to enjoy.

If you want to join Team RP for this or any of our other events, please contact Emily Webb on 01280 821334 or emily@rpfightingblindness.org.uk.

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ORGANISATION NEWS

RPFB Services Department We’re excited to announce an important change at RP Fighting Blindness. We’re reformulating our services provision, and increasing its breadth and scope following consultation with members, volunteers and other charities.

Previously our Engagement Department was responsible for service delivery, patient support and professional engagement work.

This department has now evolved into the Services Department and will retain many of its previous remits such as management of our helpline services, befriending, information, support and patient events, as well as taking on new responsibilities.

The new Services Department will be structured differently to facilitate a more regional model of working. Instead of being wholly office-based, we will be employing Regional Development Managers spread across five different areas of the UK. This means there will be more local-to-you support and events being made available.

be able to actively reach more people with inherited retinal dystrophies and their families through a variety of means. This will include encouraging and facilitating peer-to-peer support more effectively than ever before, a better calendar of regional events and working more closely with the RPFB Local Group network.

Each Regional Development Manager will work closely with local and national sight loss charities in that area in order to identify and reach people with an inherited retinal dystrophy to ensure that members of the community are able to access the support they need and are appropriately signposted to other local services. We believe we will be able to reach out to those living across the UK much more effectively with this new model.

This new department is being initially headed up by Antony Moore, who has a wealth of service provision and community support experience. Antony is joining the organisation in early September The key benefit of the introduction and will be coming from the of a regional model for the provision National Deaf Children's Society, of support services is that we will where he is currently employed as 4 The RP Helpline 0845 123 2354 Head of Children & Families

ORGANISATION NEWS Support Services. Denise Rawden has been promoted to Volunteer Development Manager and will be working closely with Antony as the new department takes shape. We will be looking to recruit our first Regional Development Manager in the coming months, and then will employ a rolling programme to complete the new model.

We anticipate this new regional

Helpline Training Weekend July saw our dedicated RP Helpline volunteers come together for our annual Helpline Volunteer Training Weekend at Kents Hill Training & Conference Centre in Milton Keynes.

The weekend is important for the Helpline volunteers as it provides an opportunity to learn new skills, review best practices and to learn from our guest speakers. This year we heard from Judith Potts from Esme’s Umbrella about Charles Bonnet Syndrome; Fiona Powell joined us from RNIB Eye Health Team to talk about various conditions that fall under our umbrella, and Dr Stephen Hicks presented updates about his Smart Glasses technology.

The team were also joined over the weekend by Tina Houlihan, RPFB’s

model taking time and effort to complete and establish. This is an exciting and completely fresh approach for the organisation to take, but one which we feel is essential to grow our patient support offering. We’re looking forward to working with our partner organisations more and more over the coming years and improving how we offer our services and support to you.

CEO who took the opportunity to update the volunteers about the latest developments at the charity.

Emma Hughes , Deputy CEO, Deborah Laing, our Senior Fundraising Manager and Clair Pudaruth, our Administrative Assistant joined the team to help over the weekend as well as Thomas O’Neill, our Communications & PR Manager.

The weekend is also an important opportunity for the team to get together and support each other; a great deal of learning happens over dinner and a glass of wine, when the team gets a chance to share experiences and socialise. The weekend was a great success and we’d like to say a big thank you to all of our Helpline volunteers; without their hard work and dedication, we would be unable to offer this unique and valuable 5 service.

FUNDRAISING

New Research Projects ABCA4 mutation will be improved, and the identification of those suitable for participation in future clinical trials made easier.

Following our Innovation Fund Appeal, we’re excited to announce that the RP Fighting Blindness Board of Trustees has chosen three new research projects to fund.

Their decision was particularly difficult this year, as all of the shortlisted projects featured internationally competitive research. Finally, after much deliberation, the following projects were chosen: Identification and functional characterisation of the missing ABCA4 variants in Stargardt disease ABCA4 mutations affect the majority of people with recessive Stargardt disease and about 30% of those with con-rod dystrophy. This project aims to develop a costeffective sequencing method for the entire ABCA4 gene, sequence 1,000 Stargardt’s cases worldwide and finalise a process for testing the effects of mutations. Ultimately the diagnosis of people with an

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Modelling effects of TIMP-3 mutations in RPE - insights into Sorsby Fundus dystrophy and night blindness in retinal dystrophies This project aims to explore how changes in a protein called TIMP-3 damage the retinal pigment epithelium (RPE), leading to Sorsby Fundus dystrophy. The team will also look at whether gene editing technology might be a viable treatment for the condition.

FUNDRAISING

deliver this new and groundbreaking research.

A number of fundraising activities in the coming months will be raising funds for these projects, so look out for these and please give generously if you can.

For example, the Big Give Christmas Challenge launches on Non-viral gene therapy using S/MAR vectors for Usher syndrome. #GivingTuesday (28th November) and continues for one week. During This project explores an alternative that week we will be raising funds to traditional gene therapy, which for the Usher syndrome non-viral may have implications for a wide gene therapy project, and every range of inherited retinal donation you give will be doubled, dystrophies, not just Usher meaning you can make a huge syndrome. S/MAR vectors have the difference. capacity to hold much larger genes, and they have no viral components.

The team will explore whether this new approach represents a safe and effective future treatment If you would like more information option. about the Big Give Christmas Challenge or can help us spread the We need your help! word about this campaign please contact Deborah on 01280 821334 We’re so excited about each and every one of these projects, and we or email deborah@rpfightingblindness.org.uk look forward to bringing you updates as the teams start work.

Runners in this year’s Oxford Half Those of you who donated to our Marathon will also be raising funds Innovation Fund have already made for these exciting projects! an important contribution, but we need to continue raising money to

www.rpfightingblindness.org.uk

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INFORMATION

Paid for announcement by Second Sight Once the evaluation has been completed, NHS England will decide whether to routinely pay for this artificial vision treatment for patients who have lost a significant amount of sight due to RP. NHS England has announced that it is to evaluate 10 British patients who will be implanted with the Argus® II Retinal Prosthesis System, following their progress for a year, measuring quality of life improvements experienced by the patients.

If you or a family member would like to consider contributing as a patient candidate for the evaluation, please call UK freephone 0800 520 0925 for more information.

Surgeries will take place at Moorfields Eye Hospital in London

by Prof. Lyndon Da Cruz and at Manchester Royal Eye Hospital with the surgeon there being Prof. Paulo Stanga.

This advertisement is paid for by the company and its inclusion in this newsletter does not imply any preferential endorsement by RP Fighting Blindness.

RP Fighting Blindness Anniversary Rose As many of you will be aware, RP Fighting Blindness was honoured last year by the British Isles Rose Society, which bred a new rose to mark our 40th anniversary. We’re delighted to announce that the rose, named A Vision of Hope, is now available for sale from R V Roger of Pickering. You can order them online by visiting

http://www.rvroger.co.uk/ or by calling 01751 472226.

The rose is a deep pink with yellow hues. Each rose sold will benefit RP Fighting Blindness, with two pounds of each sale being donated to us.

We’d like to say a personal thank you to David Wilce, Chairman of the British Isles Rose Society, who has been instrumental in this wonderful tribute to our charity.

RPFB Treks West Highland Way - 20th-26th August On 20th August 2017, a group of 11 trekkers embarked on the West Highland Way trek for RP Fighting Blindness. The group of adventurers took on 96 miles of trekking through fantastic scenery over six days. The group was made up of a mixture of fully sighted and visually impaired people. We’ll report more about this great trek in the next issue of Look Forward!

2018 Trek Our plans for the 2018 trek are well underway, and after an online poll and votes at the Annual Conference, the destination has been narrowed down to two options: Mont Blanc and Transylvania. Below are more details on each. If you are interested in either of these treks please let us know!

Contact Emily on 01280 821334 or emily@rp"ghtingblindness.org.uk

Mont Blanc

Transylvania

Location: France, Switzerland & Italy Length of challenge: 5 days Month: June/July (TBC)

Location: Romania Length of challenge: 6 days Month: July (TBC)

Take in three countries in three days of trekking as you circle the highest peak in Western Europe!

Trek through ancient forests and breathtaking valleys as you experience the home of Dracula!

FUNDRAISING

Walking Terra Firma

On 31st March 2017, Robin Frape and Julie Binnington set off from their home on the Isle of Wight on an epic challenge - to walk around the world for RP Fighting Blindness.

Their challenge so far hasn’t been completely smooth sailing, with a few injuries sustained, and Robin having to take a trip to Moorfields Eye Hospital due to a swollen macular.

Their aim was simple; to raise vital funds for the organisation, and to collect “visual memories” for Robin who is losing his sight due to RP.

Thankfully the operation required went well, and Robin and Julie are now looking forward to the next phase of their adventure.

So far they have trekked across England and will next be walking around Wales before heading up to Scotland, over to Ireland and then going to Portugal and beyond!

Robin even took a side trip in June and trekked to Annapurna Base Camp!

You can read Robin’s story, see updates and donate on their Just Giving page at www.justgiving.com/fundraising/ walking-terra-firma

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If you’d like to get involved with fundraising for our work, check out our website for fundraising ideas and tips.

RESEARCH

First Synthetic Retina Created A student at the University of Oxford has engineered a novel prototype retina. The product is a synthetic, soft-tissue retina compromised of soft water droplets and biological cell membrane options.

of our eye just like the original retina,” elaborated RestrepoSchild.

and ultimately building an image of the scene being viewed.

You can follow ours and other organisation’s research news on our website.

The implant was designed like a camera where the cells work as pixels detecting and reacting, forming a grey scale image, Lead researcher Vanessa Restrepo- according to the announcement.

Schild created cell-cultures from Ultimately, the goal of this natural, biodegradable materials that don’t contain foreign bodies or experiment is to develop the next generation of less invasive medical living entities. Opting for this technologies closely resembling method means the experimental human body tissues for treating implant is less invasive and won’t conditions like retinitis cause an adverse reaction in the pigmentosa. body.

The goal of this implant is to closely A patent has been filed for this technology, but the next phase of mimic the natural human retinal process. Retinas are situated at the testing will involve using a larger replica to explore the potential for back of the eye where they use it to recognise different colours and protein cells to convert light into potentially even shapes and electrical signals. These signals move through the nervous system, symbols. The study was published in the journal Scientific Reports. activating a response in the brain

“The synthetic material can generate electrical signals, which stimulate the neurons at the back

www.rpfightingblindness.org.uk

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EVENTS

Annual Conference Success Prof Mike Cheetham of UCL presenting on small molecule therapies, Prof Tara Moore of Ulster University presenting on correcting genetic mistakes, and Prof Susie Downes of Oxford Eye Hospital speaking about genetic testing.

June the 24th saw the RP Fighting Blindness annual conference take in place in London. The event was a great success and we welcomed almost 200 people to One America Square near Tower Hill.

In a change to the past few years, we chose a new venue and refreshed the conference format, incorporating workshops. We also introduced a more in depth written programme, including speaker biographies, AGM information and other useful communications. We launched an app this year too, so delegates could look up information about the event on the go, and simplified lunch. All these changes were implemented following careful consideration of the 2016 feedback.

Our Chair of the Board, Don Grocott, acted as host for the day and kept the pace up! We were fortunate enough to attract some of the country’s leading scientific researchers as speakers, with 12

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Long serving medical trustee Prof John Marshall MBE presented the John Marshall Award for RP Science to Prof Mike Cheetham; a fitting tribute to a man who has done much for both the charity and RP research. Mike accepted the award on behalf of the team he worked with on the published paper Identification and Correction of Mechanisms Underlying Inherited Blindness in Human iPSC-Derived Optic Cups.

Our Chief Executive Tina Houlihan addressed the audience, and showed a short video about the charity’s work which featured a broad range of people involved with our work, from trustees and staff, to fundraisers and Helpliners. You can view this video on our website.

The RP Awards followed Tina’s presentation, and our Deputy Chief Executive Emma Hughes announced the nominees and winners. You can learn more about these on our website.

EVENTS Our inspirational speaker presented after lunch - this year’s was Steve Bate MBE, athlete, adventurer and professional speaker with RP. His talk about his journey was truly inspirational, and he proved a great hit with this year’s delegates.

We held our workshop sessions in the afternoon, and attendees had a choice of five one hour sessions.

These consisted of Genetic Management, Retinal Implant Technology, Benefits, RNIB Connect & Online Today, and Employment.

We had some fantastic workshop facilitators, and thanks must go to Second Sight who sponsored the Retinal Implant Technology workshop and provided the facilitators.

The ever popular RP Question Time was one of the final sessions of the day, with the morning’s medical speakers joining Prof John Marshall MBE on the stage to take questions from our delegates. A broad range of topics were covered, from the effect of Brexit on British and European research, to inheritance

patterns and the RP Genome Project’s relationship with the 100,000 Genome Project.

Our Chair Don Grocott rounded off the conference by addressing the audience, thanking them for attending and of course the day’s speakers. The formal AGM followed the conference, where resolutions were passed to adopt the Annual Report & Accounts for 2016, reappoint our auditors, and re-elect trustees who were due for reelection. If you’d like to learn more, you can request a copy of the minutes of the AGM by contacting head office.

We hope everyone who attended enjoyed the day, and we would like to thank the many speakers and workshop facilitators who so generously gave their time for making the day possible. Thanks must also go to the volunteer guides from Guide Dogs who helped many of our delegates.

Audio recordings from the day are available on our website. Please note only the Genetic Management Workshop was recorded on the day.

Should you have queries about any RP Fighting Blindness event, please contact head office on 01280 821334 or email info@rpfightingblindness.org.uk www.rpfightingblindness.org.uk

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RESEARCH

Working Age Group Project Update You will have learnt in the previous issue of Look Forward about the launch of our Working Age Group Project, a partnership project led by us with involvement from Thomas Pocklington Trust and RNIB.

people who might be willing to share their experiences about employment.

We want to connect with working age people who are living with degenerative sight loss and understand their experiences of The aim of this project is to inform seeking work, maintaining careers, the development of useful, relevant employment services and and sustainable support services, professional development. This with a view to ‘future-proofing’ means we’ll be travelling the careers for when visually country conducting face to face impairment becomes a reality. We interviews, holding discussion and want to ensure that working age focus groups and distributing people who are living with questionnaires and performing degenerative sight loss have other data-gathering exercises. choices about their future working lives, know in advance their options This activity will commence in the next few months, and we’re excited with regards to employment and to be leading this initiative. We have support to fulfil their firmly believe that employment ambitions. services are of huge importance to We called for people to register our community, and we see this as their interest in participating, as we the first step to influencing and will be requiring people to share improving employment outcomes. their experiences of finding and If you’d like to register your interest retaining employment with an inherited retinal dystrophy. We were for possible participation in this research project, please email our keen to get a good geographic Communications & PR Manager spread of people, and a range of Thomas O’Neill your location and a ages and employment histories. brief summary of your employment Were delighted so many of you situation. His email address is responded, but we’d love more tom@rpfightingblindness.org.uk 14

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EVENTS

20th Retina International World Congress The 20th Retina International World Congress will be held in Auckland, New Zealand from February 7th 11th 2018.

blindness and world leaders in effective peer support methodologies and treatment advocacy.

This five day event gives delegates the chance socialise and relax too, with The Retina International World Congress brings together the world’s the aim of bringing together people with a retinal disorder and their foremost retinal scientists and families, as well as ophthalmologists, clinicians, along with the global leaders in patient advocacy and peer optometrists, scientists and rehabilitation professionals. It’s a support. chance for people from all over the Retina International 2018 will offer world to connect and learn from one patients and their families, clinicians, another. rehabilitation professionals, students and anyone with an interest in retinal Some elements of the programme are yet to be confirmed, but the Retina disorders with interactive learning International website will be updated and networking opportunities that include short scientific presentations, over the coming months. The main bulk of programme and scheduling expert panels, treatment approach information is available already, and plenaries and social events. we’ll be writing a post-event report The congress will include insight into which we will publish for our retinal research in areas such as members. If you’re planning to attend genes and gene therapy, cell therapy the Retina International World and regenerative medicine, retinal Congress, do let head office know! implant technology, novel drug As usual, the congress organising therapy and epidemiology. It will committee has arranged for examine critical issues associated subsidised travel and accommodation with expediting the development, options for some qualifying accessibility and availability of delegates; you can learn more about treatments for retinal disorders this on the congress website. There is Its aim is to create the best a Youth arm of this event, and keynote educational environment possible speaker bios have been published. and 2018’s key contributors include For more information visit the most acclaimed experts in biomedical research, clinical practice, http://retina2018newzealand.com or email a.crawshaw@auckland.ac.nz rehabilitation best practice in

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EVENTS

RPFB Families’ Conference proves great success RP Fighting Blindness held its first ever Families’ Conference in Milton Keynes earlier this year, for families affected by inherited progressive sight loss. This free event saw 150 people attend from across the UK for a three day programme of speaker presentations, interactive workshops, fun activities and Q&A sessions.

Paediatric Retinal Specialist, Bo Anderson, Child Educational Psychologist and Laura Ross, Children’s and Genetic Eye Clinic Liaison Officer. RPFB trustees Rachael Stevens and Lucy Withington were in attendance, and many staff from head office came and helped run the event, giving delegates a chance to meet some of our team.

The Families’ Conference was developed as a fully-inclusive event to provide families affected by inherited retinal dystrophies the opportunity to meet and socialise in an informal setting, and to learn more about the services and support available to them.

Older children taking part in the weekend had the chance to go on an outdoor activities day at Caldecott Xperience, consisting of sailing, archery, zorbing and canoeing. MK Dons Inclusion Team also ran activity sessions, with football training, multi-sports and a beat the goalie competition. We wanted to encourage an open and positive atmosphere for the

Charities including Guide Dogs, Sense and RNIB ran workshop sessions, and speakers included eminent researchers such as Prof Graeme Black, Director of the Manchester Centre for Genomic Medicine, and Prof Andrew Webster Consultant Ophthalmologist at UCL. Other medical experts included Dr Mariya Moosajee, Consultant Ophthalmologist at Moorfields, Rob Henderson, 16

The RP Helpline 0845 123 2354

EVENTS Fighting Blindness. “Enabling peerto-peer support is a hugely important part of our work; by facilitating this event, we’ve allowed families, some of whom may have felt isolated, to socialise with and learn from one another.

It’s thanks to the support of our generous sponsors including Spark Therapeutics and sight loss charity children, some of whom knew few VICTA, and the help of so many or no other children with an IRD. We volunteers like the MK Dons, that saw many friendships develop over we were able to hold this event. Our the course of the weekend, and are most sincere thanks must go to delighted that both child and adult everyone who contributed.” delegates had fun and made new An important part of the weekend connections with peers. was to gain feedback and Bhavini Makwana, RPFB information from families affected Ambassador and a Families by progressive inherited sight loss, Conference delegate who attended and to help shape the future with her husband and two direction of the charity’s support daughters, commented “What a services. The charity intends to fantastic RP Fighting Blindness grow its support and services remit Families Conference, which proved over the coming years, with the to be a huge success; lots of recent Families’ Conference being information shared, advice gained, the first step in the journey. well organised and connecting with people all going through the same fears, dilemmas, concerns and giving each other hope.”

“We’re truly delighted that our delegates had such a great time, and that the event proved such a success,” commented Tina Houlihan, Chief Executive at RP

www.rpfightingblindness.org.uk

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FUNDRAISING

Family Funds We can also provide various fundraising materials including sponsorship forms, posters, balloons, collecting buckets and tins as well as t-shirts, running vests and cycling tops with the RPFB logo/brand. You will have access to dual branded / bespoke materials if required and support for your publicity and promotion.

Mark Baxter and family

Could you set up a Family Fund for RP Fighting Blindness?

Family Funds are a great way to fundraise as a family or group, whilst also spreading the word about the charity in your local community.

Your Family Fund will have its very own webpage, allowing you to tell your story and raise your profile, all backed by our social media activity.

You can choose your own name for your fund, and associate your fundraising with a specific area of our work e.g. research, support, helpline or project based activities.

You will have support from head office, who will advise you on your fundraising activities and update you on the impact you are making.

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As well as being the first to hear about the latest opportunities within the charity such as marathon places and other activities, we are looking at exciting networking opportunities for Family Funds in the future. Hopefully these will enable you to meet other Family Fund members and share ideas and opportunities.

To find out more about Family Funds please visit our website or contact Emily on 01280 821334 or emily@rpfightingblindness.org.uk.

Did you know you can download a fundraising pack on our website?

It’s full of hints and tips on how to run your own events, contains an A - Z of fundraising ideas plus lists the materials we can provide to help you, and the ways we can support your efforts.

NEWS

Paid for announcement by Focus4People info@focus4people.com and we will advise you how to register your interest. You can also log on to our We are a market research Company website www.focus4people.com based in London. Our clients are We are registered with the data well known companies that are looking for people to participate in protection act and at no time will website testing plus looking at and your information be shared to any third parties without your consent. testing new apps.

Take part in market research and get paid for your opinions

We often need people who are visually impaired and require aids to be able to look at computer screens. If you live or are able to get to Central London please email

This advertisement is paid for by the company and its inclusion in this newsletter does not imply any preferential endorsement by RP Fighting Blindness.

Staff Updates We’re pleased to announce Deborah Laing, previously Trusts & Major Donor Manager has been promoted to Senior Fundraising Manager.

Emily Webb, previously Challenge Events Coordinator is now our Fundraising Events Manager. We’ve welcomed a new member to the Fundraising Department too, in the form of Leanne Thomas who is our new Fundraising Assistant.

Denise Rawden, previously Engagement & Support Officer has

been promoted to Volunteer Development Manager, and Vanessa Davis has been promoted to Development Manager.

We look forward to welcoming a new member to the team in September in our Services Department; Antony Moore who is joining us from National Deaf Children's Society will initially be heading up the team. You can learn more about our plans for the Services Department on page four. www.rpfightingblindness.org.uk

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RESEARCH

Functional retinal prosthesis created from organic materials An organic retinal prosthesis has restored light perception in blind rats with retinitis pigmentosa, without the need for complex hardware.

The research team from the Italian Institute of Technology in Genoa combined an organic semiconductor, which has photovoltaic properties in ambient light conditions, with a conductive polymer to pass the generated electrical charge to the eye’s nerve cells. Both are layered atop a silk substrate that allows the implant to heal onto the retina.

"We hope to replicate in humans the excellent results obtained in animal models," said lead researcher Grazia Pertile, MD. In a study published in Nature Materials, the team showed that rats exhibited signs of lightsensitivity for as long as six to ten months after implantation.

comparable to the ambient light outside at twilight. Positron emission tomography imaging of the rats’ brains also demonstrated increases in basal metabolic activity within the primary visual cortex.

How the electrical charges from the photovoltaic molecules are converted into nerve signals remains unknown. Another limitation is the inability to quantify the degree of sight restoration in an animal model.

Nevertheless, the implant appears After receiving the prostheses, the safe, as there were no signs of inflammation in the rats and the RP rats displayed pupillary light reflexes close to that of normal rats implant stayed in place during follow-up. at as low as four lux, which is

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RNC CASE STUDY Joe Roper is a student at RNC and has X-linked RP. Joe and his family have traced their RP history into the 1800s, knowing that his grandad’s uncle was affected. In Joe’s family, there generally follows a similar route with sight deterioration, with sight lost in the mid- to latetwenties.

returning home to Cambridgeshire after his second year at RNC to work as a self-employed masseur.

He is realistic about his job expectations and knows that it will take a while for word of mouth to build up his clientele.

“I haven’t found a type of massage I don’t like. I’ve passed my Anatomy & Physiology and Holistic Massage parts of the course and am currently studying Reflexology and Sports Massage. Next year I will complete Aromatherapy and Indian Head Massage, and then I will be able to offer clients any type of massage they wish.”

Joe has a passion for helping “It is sad to know others, which was another reason why he wanted to attend RNC. He that I have got knew that he would not have the around ten to 14 years of sight left. least sight amongst his peers, but he wanted to be able to offer them But, I’ve lived around blind people my whole life, so I’m prepared. Most help whilst enough of his sight remains to allow him to do so. of the time, I am not scared of it happening. I’d rather know I am Students at RNC come from all over going blind because I can adjust; the UK with varying eye conditions. there won’t be the shock of Each student has a personalised blindness as there can be for timetable that includes their people it happens to as the result academic or vocational course, of an accident. I am preparing for it leisure activities and work on both mentally and physically, which improving their independence and is partly why I am at RNC.” mobility skills.

Joe is studying Massage & Complementary Therapies at the college and is looking forward to

For more information about RNC and its courses visit www.rnc.ac.uk or call 01432 376 621.

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NEWS

Be My Eyes App We’ve recently been made aware of an interesting free app designed for blind and partially sighted people; Be My Eyes.

When launched, the app establishes a live video connection between blind and visually impaired users and sighted volunteers. Then, using their phone’s camera, users are able to ask a volunteer at the other end of the connection to assist them, perhaps by reading something, advising of a potential hazard or directing where something is.

Be My Eyes has over half a million

visually impaired users registered in 150 countries, and is available in 90 different languages. There are no limits on the number of times you can use the service which is currently available for download in the Apple App Store, with an Android version in development.

According to the Be My Eyes website, the service matches a user and a volunteer within 60 seconds 90 per cent of the time. You can learn more about this app, read testimonials and discover how to volunteer as a sighted user by following this link: http://bemyeyes.com/

8th October 2017 7

4th March 2018

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Contact Emily Emilly or Leanne on 01280 821334 or ema email ail ĨƵŶĚƌĂŝƐŝŶŐΛƌƉĮŐŚƟŶŐďůŝŶĚŶĞƐƐ͘ŽƌŐ͘ƵŬ ĨŽƌ ŵŽƌĞ ĚĞƚĂŝůƐ͊

US nanowire and wireless electronic retinal prosthesis research American researchers are making progress on a retinal prosthesis that aims to restore functional vision to visually impaired people.

visual acuity,” Mr Thorogood highlighted.

Tests using a prototype device in rabbits showed response to light The development could help people stimulation in the visual cortex. Mr Thorogood said that researchers living with degenerative eye hoped to begin clinical trials in conditions, including retinitis humans within 18 months. “We are pigmentosa, age-related macular very confident that we have a degeneration and diabetic eye device that is going to change the disease. lives of people who cannot see.”

The project is the result of a Senior author and professor of collaboration between a team of bioengineering, Gert engineers at the University of California San Diego and the start- Cauwenberghs, said that the device was activated directly by light up, Nanovision Biosciences. entering the eye at high spatial The new prosthesis relies on two resolution. The prosthesis was technological breakthroughs. powered and controlled by an Silicon nanowires mimic the lightexternal electrical signal. The sensing rods and cones to technology was more responsive at simultaneously sense light and low light levels and allowed for the stimulate the retina, while an tailoring of stimulation levels to external wireless device transmits changes in ambient light and the power and data to the nanowires. specific needs of a patient, he Nanovision Biosciences chief explained. executive officer, Scott Thorogood, Professor Cauwenberghs said that existing retinal highlighted that the long-term prostheses only gave patients the objective of the work was to ability to detect light from drastically improve spatial shadows. resolution of retinal prostheses he “We have a theoretical target of concluded. around 20/200 which is pretty good Research describing the project is compared to people who can just published in the Journal of Neural see light and dark. You would have Engineering. some useful vision with that kind of 23

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