Look Forward issue 159 - May 2016

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Look Forward Issue 159 May 2016 Registered Charity No.1153851

Inside AGM Notice Page 3 RPFB Annual Conference Page 4 London Marathon Success Page 8 Euro 2016 Fundraiser!

Page 10

Looking ahead to a great anniversary year!

The RP Fighting Blindness office team has been very busy these past few months; from organising our upcoming annual conference, to supporting our fantastic London Marathon runners, to planning Patient Information Days and RP Seminars and exploring new means of fundraising for our work. Our 40th Anniversary Appeal has gone from strength to strength and we’ve already had many people return money they’ve collected in the special 40th Anniversary Appeal collection boxes we distributed with the last issue of Look Forward. Read on to learn more about what we’ve been up to, and what we have in store for the rest of the year!

Meet the Fundraising Team Page 12 Stakeholder Liaison Group Meeting Page 14 Modified Glass Page 16 RP Seminars Page 18 Optogenetics Trials Page 20 Newcastle Patient Information Day Page 21

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NEWS

Letter from the Chief Executive Tina Houlihan I hope this latest issue of Look Forward finds you well. As mentioned on the front cover, we’ve been very busy here at head office working on a whole host of projects, more of which you can read about later.

The 40th Anniversary Appeal is still going strong, and I must thank again everyone who has supported it so far. We had a terrific team running the London Marathon for us in April, put together by RPFB trustee Roger Backhouse, which proved a huge success. Community fundraising events have been taking place up and down the country, and I would like to thank everyone who has taken the time and effort to help us carry on our important work.

I hope to see many of you at our upcoming annual conference; it promises to be an extra special RP Fighting Blindness funds medical research into retinitis pigmentosa and also offers a range of information and support services to patients and their families.

event with this being our fortieth year. We’ve secured some great speakers and we feel sure the programme will be a success.

If you can’t make our conference, don’t forget we run a range of other patient events; check Look Forward, visit our website or contact us directly if you want to find out more.

Please do feel free to email me at chiefexecutive@rpfightingblindness.org.uk

should you wish to get in touch with me for any reason.

Thank you for your ongoing support.

Do you follow us on Facebook and Twitter? Search for RP Fighting Blindness on Facebook to find our Page and various groups, and follow us on Twitter on @RPFightingBlind for the latest updates and news about the charity.

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

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NEWS

Notice to Members of RP Fighting Blindness Annual General Meeting The RP Fighting Blindness Annual General Meeting (AGM) will take place at 16:40 on Saturday 18 June 2016. All full members are entitled to attend, speak and vote at the AGM which will be at The Pullman Hotel, Euston Road, London after the RPFB Conference.

This will be the third AGM of the Charitable Incorporated Organisation (CIO) and we look forward to welcoming members to this meeting.

(b) Lucy Withington was appointed trustee by the board since the last AGM and so retires but is standing for re-election 7. Any Other Business 8. Chairman’s closing remarks

Proxy voting Any member of the CIO may appoint another person as a proxy to exercise all or any of that member’s rights to attend, speak and vote at a general meeting of the CIO.

You can appoint someone to act on your behalf by informing RP Agenda for RP Fighting Blindness AGM Fighting Blindness in writing. This 1. Chairman’s welcome must state your name and address, 2. Introductions the identity of the person you wish 3. Apologies to elect to act for you and the 4. Annual Report and Accounts for 2015 meeting at which you are giving (a) Introduction them permission to vote on your (b) Questions from the floor behalf. (c) Resolution: to adopt the Report and Accounts for 2015 5. Resolution: To appoint Davies Mayer Barnett as auditors 6. Resolution: The Reappointment of trustees. (a) The following trustees retire by rotation and are standing for re-election: Roger Backhouse Colin McArthur

Written confirmation of proxy voting must arrive by 17 June and can be posted to: RP Fighting Blindness PO Box 350 Buckingham MK18 1GZ Or alternatively emailed to info@rpfightingblindness.org.uk 3

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EVENTS

The RP Conference 2016 The 2016 RP Conference is being held at the Pullman Hotel on Euston Road, London. The hotel is just a few moments’ walk from both King’s Cross St Pancras and Euston stations, making it a convenient location for those travelling from afar. A buffet lunch will be provided.

Members, patients, family and friends, supporters, clinicians and researchers alike are welcome to attend the RP Fighting Blindness Conference on Saturday 18 June 2016 to share information, research news and everything RP. This one-day event is always an important part of the RPFB calendar, bringing together around a hundred people to hear from our top speakers, learn from each other, meet the RP Fighting Blindness team, as well as socialise and catch up with old friends. The event also incorporates the charity’s formal AGM as the last session of the day.

Members of RP Fighting Blindness are welcome to take part at no charge together with a partner or guide. Non-members are equally welcome at a cost of £30 each, which includes refreshments all day and the buffet lunch.

For members and non-members

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alike, it is essential that places are booked, as seating and catering arrangements are made in advance.

Please contact head office on info@rpfightingblindness.org.uk or call on 01280 821334 to confirm the number of places required. Nonmembers will be invoiced.

This year’s RP Fighting Blindness Annual Conference is being brought to you in partnership with Retina Implant AG and Optelec. We thank them for their support.

Please inform us of any communications needs you may have when you register.

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EVENTS

Conference Programme 09:00 Exhibition, stands and registration open 09:55 Convene and Conference Welcome Chairman, Don Grocott 10:00 Inspirational Presentation Ashish Goyal, credited as the world’s first visually impaired trader 10:25 Inspirational Presentation Jessica Luke, Graduate Coordinator at Blind in Business 10:50 Tea and coffee break With a chance to view the stands and chat 11:15 Providing Care for today and hope for tomorrow Tina Houlihan, Chief Executive at RP Fighting Blindness 11:30 The RP Awards Presented by Dr Lucy Withington, RPFB Trustee Nominations and Presentations • The Lynda Cantor Founder Award for Contribution to the Future of the Charity • The John George Award for Volunteering • RP Fundraiser of the Year • The Roger Green Award for Special Contribution • 40th Anniversary Award 12:15 40th Anniversary rose naming, followed by cake cutting Lynda Cantor MBE, Honorary President 12:30 Lunch Lunch is provided and the stands will remain open Lunchtime workshop facilitated by Retina Implant AG, one of our event sponsors 13:25 Please reconvene promptly for the afternoon session 13:30 Scientific and Medical Speakers Introduced by Professor John Marshall, RPFB Trustee

18 June 2016

Four Decades of Discovery Professor John Marshall MBE Tissue Engineering Retina Professor Majlinda Lako Gene therapy: an update on the UCL / Moorfields clinical trials programme Professor Robin Ali 14:45 The John Marshall Award for RP Scientist Presented by Professor John Marshall 14:55 RP Question Time Chaired by Professor Andrew Webster For the panel session Professor Majlinda Lako and Professor Robin Ali will be joined by Professor John Marshall with the session hosted by Professor Andrew Webster 15:55 Tea and Coffee Break With a chance to view the stands and chat 16:20 Chairman’s Conference Address Don Grocott, Chairman of the Board 16:25 Updates from department managers Ian Watson, Thomas O’Neill and Sue Drew 16:40 Annual General Meeting** The formal business matters of the charity 17:15 Event close **Annual General Meeting - agenda for this session can be found on page three.

This session covers the formal business matters of the charity. Please note that though non-members are very welcome they will not be entitled to speak or vote on any resolution.

Members of the charity not attending the main conference are still able to attend this session by arriving during the preceding tea break.

Please collect your voting card on arrival.

Programme subject to amendments without notice.

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TECHNOLOGY Facebook launches system which can ‘read’ photos and tell VI people what appears in them.

With an estimated 1.8 billion images uploaded every day to social networks such as Twitter, Instagram and Facebook, some visually impaired people have found a lack of description attached to such images inconvenient; a new service from Facebook is attempting to remedy this however.

Using artificial intelligence, Facebook’s servers can now decode and describe images uploaded to the site and provide them in a form that can be read out by a screenreader.

Facebook says it has now trained its software to recognise about 80 familiar objects and activities. It adds the descriptions as alternative text on each photo. The more images it scans, the more sophisticated the software will become.

Some of the objects the new technology can recognise are:

The man behind the development is Matt King, a Facebook engineer who lost his sight due to RP. “On Facebook, a lot of what happens is extremely visual,” King says. “And, as somebody who’s blind, you can really feel like you’re left out of the conversation, like you’re on the outside. Our artificial intelligence has advanced to the point where it’s practical for us to try to get computers to describe pictures in a meaningful way.”

“This is in its very early stages, but it’s helping us move in the direction of that goal of including every single person who wants to participate in the conversation.

The system currently describes images in fairly basic terms such as: “There are two people in this image and they are smiling.”

For King, it is a matter of principle - he says sighted and visuallyimpaired people should have equal access to the content posted Transport - car, boat, aeroplane, bicycle, online. Sighted people know who is in many of the photos they see, so train, road, motorcycle, bus blind people should also be Environment - outdoor, mountain, tree, snow, sky, ocean, water, beach, wave, allowed that same privilege, he sun, grass believes.

Sports - tennis, swimming, stadium, “I feel I have a right to that basketball, baseball, golf information,” he says. “I am asking Food - ice cream, sushi, pizza, dessert, for information that is already coffee available to other people to be Appearance - baby, eyeglasses, beard, smiling, jewellery, shoes, selfies revealed to me. So I see it as a matter of fairness.”

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FUNDRAISING

Virgin Money London Marathon Success!

As ever, RP Fighting Blindness was well represented at this year’s London Marathon. Always an important part of our fundraising schedule, this year saw a hardy group of 27 runners coming together to make Team Blind as a Bat, running for us!

guides. The team is raising a combined £175,000 through personal and corporate sponsorship.

Notable team members included Lord Coe’s son Harry, plus four visually impaired runners and their

our runners as they came past.

Others were waiting at the finish line to offer congratulations and

The money raised will support Professor Robin Ali at the UCL Institute of Ophthalmology, worldrespected medical researcher and leading expert in the field of gene Team Blind as a Bat was put together by Roger Backhouse, who and stem cell therapy. Roger and has RP himself and is a trustee and his brother raised money for the long-time supporter of the charity; start of a pioneering five year gene he ran the London Marathon for RP therapy research project of Fighting Blindness in 2010 with his Professor Ali’s in 2010. The money raised by Team Blind as a Bat will brother Oliver, an eye surgeon in Leeds, but this year decided to take be contributing to building a on an even bigger challenge for the programme of clinical trials. charity’s fortieth anniversary and RPFB staff manned a cheering put together an entire team of point at the mile 13 marker of the runners! route, and were able to encourage

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FUNDRAISING

directions to the Runners’ Reception.

Without you, none of it could be possible! A special thank you must The Runners’ Reception we held at go to Hannah Kenny, who volunteered as massage therapist St James Court Hotel was well on the day, helping soothe our attended by our participants and their supporters; the refreshments runners’ tired feet and calf and post-race massages were most muscles! welcome! There was quite the party If you want to support Team Blind as a Bat, you can do so by atmosphere at the hotel and everyone agreed it was the perfect sponsoring them on their way to wind down after the race.

JustGiving page, which can be found at the foot of this page.

RP Fighting Blindness got some great media coverage too, with the charity being mentioned on both BBC 1 and BBC Radio 5 Live. We also were covered in the event guide and magazine, raising awareness of our cause across a massive audience.

We’d like to say a big thank you to everyone who ran the marathon, sponsored our runners or volunteered on the day.

All our runners’ times can be found on our website.

If you’re interested in running for RP Fighting Blindness at future events, please contact Michelle Carter at head office on michelle@rpfightingblindness.org.uk Sponsor Team Blind as a Bat by visiting www.justgiving.com/blindasabat2016 www.rpfightingblindness.org.uk

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FUNDRAISING

Euro 2016 Fundraiser!

As England, Wales and Northern Ireland make their final preparations for the European Football Championships in France this summer, football fans throughout the country can join in the fun and help raise vital funds.

RP Fighting Blindness is producing a special fundraising pack of football-themed fundraising activities, so while teams are fighting to get through the group stages, you can have fun while helping raise money for our work!

For those who don’t like football, why not hold your own Euro Bake Off? We have found a recipe for a cake from each of the 24 countries taking part. Hold a competition to find the best baker in your office or club, alternatively just hold a Euro themed bake sale. Maybe create a The special pack will include:team of gingerbread footballers in • A Euro 2016 themed Quiz with a your team’s colours! set of European based questions The RP Fighting Blindness - both sporting and general fundraising pack will be available to knowledge questions download from our website from • A Euro 2016 sweepstake kit late May but you can register your get your colleagues involved: interest by emailing there will be a winner’s emily@rpfightingblindness.org.uk sweepstake along with another and we will email the pack to you in for the time of the first goal for late May. each of England’s group games • Football Shirt Friday an alternative to dress down Friday! Pick a Friday, or the day of any of England’s matches during the Euros, and wear your football shirt all day and donate

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INFORMATION

RP Fighting Blindness Communications and Information Services Are you receiving Look Forward in the best format for you? Look Forward is available in a number of different formats; full colour graphic printed, braille, on audio CD, plain text by email and full colour graphic by email. You can also download the past four issues of this magazine on our website in both plain text and full colour graphic versions.

general information about RP and signpost to other relevant organisations which might be able to offer further help or support about a range of topics. We regularly update our news pages, keeping you up to date with the latest research news, and also have a blog about our most recent activities.

You can follow us on Twitter using our handle @RPFightingBlind, plus If you would like to update your we have a number of different Look Forward mailing preferences, presences on Facebook; as well as please call the office on 01280 our main page where you can learn 821334, or email about our latest news and updates, info@rpfightingblindness.org.uk we have several different groups.

The RP Fighting Blindness As well as this magazine, we also Information and Support Group has distribute regular e-Bulletins, updating recipients about our latest over 4,500 members, posing questions, sharing advice and news and information and upcoming events by email. You can asking for support across many sign up to receive our e-Bulletins on different topics. We also have a Parent & Family Support Group and our website by clicking on the another for British Asians with RP, ‘Contact Us’ tab on our homepage among others. and the clicking ‘Mailing Lists’ option.

If you would like more information The RP Fighting Blindness website about any of the above, or the various leaflets, posters and other holds a whole host of information about RP and related conditions, as materials we can provide for raising awareness or fundraising purposes, well as the organisation itself. The RP Patient Pathway is an invaluable please contact the office and we’ll be happy to assist. resource for those recently diagnosed, and we carry pages of www.rpfightingblindness.org.uk

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ARTICLE

Meet the team In the last issue of Look Forward we introduced you to Sue and Denise of the Engagement Department in the Meet the team section; this time it’s the turn of those in our Fundraising Department, which is headed by Ian Watson, Fundraising Manager.

Julie Child is a Fundraiser who has been with the organisation for almost six years.

She has responsibility for Julie Child, corporate Fundraiser relationships, Ian joined the charity earlier this handles trust applications and year and has over 12 years’ manages legacies left to the charity fundraising management in supporters’ wills. Julie also helps experience. Before joining us at RP formulate and develop fundraising Fighting Blindness he held the campaigns, such as the successful position of Head of Fundraising at Gene Team Appeal which we ran a Brain Tumour Research, and prior to few years ago, and this year’s 40th this he was Head of Fundraising at Anniversary Appeal. Before coming Pancreatic Cancer UK. Tasked with to RP Fighting Blindness Julie overseeing all areas of fundraising worked at the Lymphoma and further developing the charity’s Association and has experience fundraising strategies, Ian is keen across communications and to expand our supporter base and marketing, as well as fundraising. help fund more research. His extensive experience in the medical Our Fundraising Events Manager research charity sector means he’s Michelle Carter is familiar to many of our supporters, as well placed to drive the charity’s she is responsible fundraising for managing our activity to new participation in high levels. We’re profile events such excited to have as the London him on board Marathon. Michelle and see what Michelle Carter, supports community changes he will Fundraising Ian Watson, Events Manager fundraisers in their Fundraising Manager make.

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ARTICLE

efforts too, by providing materials, helping organise volunteers and giving guidance and advice on events management. Having been with the organisation for almost nine years, Michelle has facilitated everything from sponsored walks to international treks, cycle challenges to bake sales, skydives to fun runs.

Emily Purchase is our Fundraising Assistant, and is the latest addition to the RP Fighting Blindness office team. Having joined us in April, Emily has been getting to grips with her new role which includes representing the organisation at fundraising and community events, supplying fundraising materials, processing donations and supporting the other members of Vanessa Davis is our the department. With a background Database in corporate events management Administrator and with the Hilton Hotel group, Emily manages all the also has charity experience having information we worked for national charity KidsOut store about as Events Support Manager. The Vanessa Davis, campaigns, whole fundraising team is delighted Database payments, events to have her support as activity in Administrator and membership. the department grows.

Vanessa is another well-known by many supporters as she often is the If you want to one to resolve queries about speak with any donations and registers delegates members of the for events when people telephone department about us. Vanessa has been with the ways you can get organisation for six years and her involved with role sees her working closely with fundraising for our Emily Purchase, cause, please call the Administration Department and Fundraising Finance Department. Prior to this the office on 01280 Assistant Vanessa worked in local 821334 or email government, administering various info@rpfightingblindness.org.uk databases.

www.rpfightingblindness.org.uk

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NEWS

Stakeholder Liaison Group In March, Stephen Jones, RPFB trustee, and Thomas O’Neill, our Communications Manager, attended the Stakeholder Liaison Group (SLG) meeting that is associated with one of our current research projects at UCL, Institute of Ophthalmology.

meetings allows direct dialogue with those we’re undertaking research for. We know how hard RPFB’s supporters work to raise funds so we can carry on our work and it’s a wonderful opportunity to explain exactly what it is we’re trying to achieve, and to answer SLG meetings are held between the questions about what we do.” research team, the charity’s Sue Perkins, member of the group representatives, and several who attended in March, writes patients with an interest in that below about her experiences of particular project work. Meeting being part of the Stakeholder and talking to patients helps the Liaison Group. researchers understand how A Different View important this is to our patient Sue Perkins, RPFB Stakeholder group, and provides a human Liaison Group member element to their work. We feel the “I was a latecomer to the SLG meetings help us all understand the way the team at UCL works, the meetings, held at UCL and led by Professor Mike Cheetham. The problems they may encounter and group was asking for any new of course some of the science members and I thought, ‘Well why albeit at a very basic level. not, it would be a good opportunity Professor Mike Cheetham leads to learn more about the mysteries of these meetings and he believes RP and any new research.’ The strongly that the SLG meeting project is finding possible drug programme is of great value to all treatments to delay onset of parties. “I’ve been an advocate of dominant Rhodopsin RP. the Stakeholder Liaison Group meetings for a long time now. As a researcher, rather than a clinician, my contact with patients is limited so the kind of group discussion we participate in through these 14

The RP Helpline 0845 123 2354

I was diagnosed with dominant RP at the age of 32, along with my father, brother and sister. It came as quite a shock, as I had not realised, yet there had been one or two signs. I remember having an

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NEWS eye check-up because I could no longer track the ball when playing squash!

The project has used funding from the British Lottery Fund and RP Fighting Blindness to conduct experiments on cell and animal The SLG meetings allow an models bred with common exchange of information and views. We are given updates about rhodopsin genes, to see if there are any likely candidates. Each drug the drug trials from Professor selected is tested and results are Cheetham and the RPFB funded compared with the control or post-doctoral research associate, Dr Dimitra Athanasiou. We began by untreated specimen. Scans are made and measurements are used explaining the eye in more detail. I to show the thickness of retinal could not help being amazed at how complex, yet beautiful the eye cells and strength of electrical signals, thus showing whether the is, a living digital camera. drug has an effect on the function The light sensitive protein called and survival of the photoreceptors. rhodopsin is created in the rod cells After all this work, three drugs have on the retina. These cells are very sensitive to low light giving us night been selected that show positive vision. Light will activate a chemical effects, and these will go to clinical reaction and electrical signals will trials and papers published. The most common dominant gene types transmit to the brain where they will be selected and tested. are translated as vision. The rhodopsin protein is trafficked to I appreciate now, why it all takes the outer segment of the cell where time, resources and painstaking it is stored in minute discs. In work to bring a drug to market. A dominant RP, one copy of the drug can have varied effects, good mutant gene is inherited. The faulty or bad, and it is always worth rhodopsin gene can cause toxic knowing the side effects. I come effects and the protein may away feeling something positive is misfold, trafficking of the protein going to happen one day, if not for can go wrong causing clumping, or me, for someone. Do I understand it the photoreceptor cell may die. all? Absolutely not, but I do get a Drugs that are already marketed for chance to ask things which never get answered anywhere else. Our other conditions have shown sight is truly amazing and knowing properties which may help delay how to preserve it would be a small the degeneration of rod cells or miracle�. improve their function. www.rpfightingblindness.org.uk 15

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RESEARCH

Modified glass could improve vision for RP patients When UV light was applied to this modified material, known as luminescence glass, it was converted into visible light, essentially increasing the amount of light detectable by the eye. The researchers observed that the glass increased the amount of visible light provided to photoreceptor cells in the eyes of zebrafish with retinal injuries that closely mimic retinitis pigmentosa.

Chemically modified glass could be used in spectacles and contact lenses to improve vision in patients with retinitis pigmentosa, according to new research.

Scientists in the US used the modified glass to convert ultraviolet (UV) light - which is not detectable by the human eye - to visible light, enhancing visual performance in zebrafish.

Researchers at the University of Notre Dame covered glass with the chemical elements terbium and europium or with optical nanoparticles to alter the way the material reacted to light.

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Ulster University optometry lecturer, Dr Raymond Beirne, who was not involved with the study, said that he believed that the principle could be used to treat retinal degeneration in humans.

Dr Beirne commented: “It will be very interesting to see if these methods can be developed for use in human research trials, as this could provide a cost-effective way of improving vision in millions of people suffering with retinal disease.�

The team will now carry out translational studies in the hope of developing optical devices to treat retinal degeneration in humans.

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FUNDRAISING

RPFB Supporter to climb Mount Kilimanjaro Everyone at RP Fighting Blindness is wishing Daniel the best of luck for this exciting fundraiser! We thank him for his fantastic support of our cause, and we look forward to hearing how he gets on later in the year!

RP Fighting Blindness supporter Daniel Hopkins is climbing Mount Kilimanjaro this October to raise funds for our work.

“This is a huge challenge for me not just in terms of fitness and the fundraising but also how I cope in climbing this mountain with very limited vision”, he said.

Daniel’s choice to climb this mountain was not only to raise money for our charity but also to help regain some of his lost independence due to his sight loss.

So far, Daniel has raised over £3,500 but is still just over £1,000 away from his goal of £4,595.

Daniel’s cause has even reached overseas to Germany, from where a donation of €40 has been received.

To donate to Daniel’s cause or to find out more, visit his JustGiving page at https://www.justgiving.com/Daniel -Hopkins2/

Did you know?

Mount Kilimanjaro is the tallest mountain on the African continent and the highest free-standing mountain in the world.

Approximately 25,000 people attempt to summit Mt. Kilimanjaro annually. Approximately twothirds are successful.

Almost every kind of ecological system is found on the mountain: cultivated land, rain forest, heath, moorland, alpine desert and an arctic summit.

www.rpfightingblindness.org.uk

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INFORMATION & SUPPORT

RP Seminars 2016 Year on year our programme of events continue to prove extremely popular. This year, in addition to our Patient Information Days and our annual conference, we are holding four seminars, primarily aimed at health, teaching and social care professionals, in different areas of the UK.

people living with conditions such as RP to attend, as the patient experience brings real understanding and added depth to the sharing of information during the discussion sessions.

We would encourage anyone affected by this group of conditions who wishes to hear about medical Whereas our Patient Information research, and the development of Days attract in the region of 100 our information and support participants per event, the seminar services, to attend one of our is a much smaller affair, usually a events when they come to a town gathering of 20 - 30 people at each near you. Take the opportunity to meeting. This number increases meet other people, share from time to time, where demand is experiences and connect with the significantly high and we have had charity and find out more about the as many as 68 people at one such work we are undertaking on behalf event. Those who register to attend of everyone living with an RP have an interest in learning more related condition, their family and about Inherited Retinal Dystrophies friends.

(IRDs) and related syndromes, Please see our website, Facebook including RP and Usher syndrome. groups, Twitter feed, Look Forward These events are aimed at magazine and e-Bulletins for attracting professionals working updated news on all RPFB events. with individuals and families Our seminars and PIDS are free of affected by RP and related charge and open to: conditions, and consist largely of VI teachers, rehabilitation officers and • Anyone affected by an IRD, RP or related syndrome social workers. Increasingly, we see • Family and friends more Eye Clinic Liaison Officers • Health and social care (ECLOs) and opticians in professionals attendance. We also encourage 18

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INFORMATION & SUPPORT

•

Anyone else interested in learning more about this important group of eye conditions

Subject areas covered by the seminar programme include presentations such as: • •

•

•

RPFB information and support services The Family perspective – diagnosis, genetic counselling and access to testing RPFB research projects, including the RP Genome project RP and future therapies

sue@rpfightingblindness.org.uk Remaining Seminars taking place Barrow in Furness Monday 27th June 2016 1.00pm - 4.00pm Venue TBC Leeds, West Yorkshire Thursday 29th September 2016 Tower Gallery (First Floor, lifts available) Royal Armouries (INT) PLC Armouries Drive Leeds LS10 1LT

Please do contact us to register your interest, as it is important that we know of any communication requirements you may have in advance, and places at the events are limited and fill up quickly!

If you would like to attend the event or you have any questions, please contact Sue Drew at RPFB for further details.

Tel office: 01280 821334 Mobile: 07738 035945 Email:

Sue Drew Engagement Manager

www.rpfightingblindness.org.uk

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RESEARCH

The first human trials of optogenetics about to commence Researchers in Texas are planning to use a ground-breaking neuroscience technique to attempt to restore the sight of blind people.

RetroSense Therapeutics aims to use a technique known as optogenetics, which involves modifying neurons so they can be turned ‘on’ or ‘off’ using light. The technique has been demonstrated in mice and monkeys, but this would be the first time it’s been used in humans.

The trial will involve 15 patients with RP. Previously, scientists have used optogenetics to erase fearful memories in the brains of mice.

Optogenetics involves infecting brain cells with a virus that has been programmed to carry a gene for a light-sensitive protein found in algae, called channelrhodopsin.

Once the cells are infected, they can be turned ‘on’ or ‘off’ in response to light of a certain colour, or wavelength.

The plan is to inject a virus containing the light-sensitive gene into neurons in the eye called ganglion cells, which transmit signals from the retina to the brain.

Since the patients’ retinas are damaged, the hope is that you can bypass these cells and make the ganglion cells directly responsive to light.

RetroSense hopes the treatment will allow patients to “see tables and chairs” or even read large letters.

However, since the channelrhodopsin protein can only respond to light of a single colour (in this case, blue light), scientists believe the patients will only see the world in monochrome. It’s not clear how they will perceive colour, or whether they will be able to see some colours at all.

Whether the trial will be a success remains to be seen but scientists are already exploring how optogenetics can be used to treat other disorders. For example, one company has plans to develop optogenetic treatments for The RP Helpline 0845 123 2354 Parkinson’s disease.

Typically, scientists must implant fibre-optic wires into an animal’s brain in order to access these lightsensitive neurons. The eye is an ideal target for the first optogenetic therapies, because it is already 20

exposed to light and doesn’t require any wires or brain surgery.

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NEWS

Newcastle Patient Information Day RP Fighting Blindness will be holding a Patient Information Day at Centre for Life, Times Square, Newcastle upon Tyne, Tyne And Wear, NE1 4EP on Wednesday 08 June 2016, starting at 11.30am and finishing 5.00pm.

surgeon, Sunderland Eye infirmary, Honorary Senior Lecturer at the Institute of Genetic Medicine, Newcastle University This is a great opportunity to find out more about Inherited Retinal Dystrophies (IRDs) and stem cell research, to put your questions to the experts, meet other people and engage with the charity.

We have a programme of four Patient Information Days planned during 2016, to be held in various regions of the UK. This event held in This event is free, includes lunch the north east of England is our and refreshments and is open to: second major event of the year.

• Anyone affected by a retinal There will be presentations on stem dystrophy cell research including: • Family and friends • Anyone interested learning more - Stem cells in Newcastle: a short trip into past, present and future… about this group of eye conditions Prof Majlinda Lako, PhD, Prof. of Places are limited, so please do Stem Cell Sciences, Newcastle contact us to register your interest!

University If you would like to attend the event - Making a retina from stem cells or you have any questions, please How far have we come and how can contact the RPFB office for further gene editing help us? details. Further details about our Dr Carla Mellough, Senior Research events programme can be found on Associate, Institute of Genetic the RP Fighting Blindness website.

Medicine, Newcastle University Telephone: 01280 821334 - Can we transplant retinas? Future Email: hope and current progress info@rpfightingblindness.org.uk Dr David Steel, Consultant Post: RPFB, P.O. Box 350, Ophthalmologist and Vitreo-retinal Buckingham MK18 1GZ www.rpfightingblindness.org.uk

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FUNDRAISING

World Record Skydive Attempt RP Fighting Blindness will be participating in this year’s Skyline World Record Skydive Attempt on 11th June 2016, where it is hoped all previous records will be beaten for simultaneous tandem skydives!

It is expected there will be over 330 jumpers taking to the skies in the name of various charities, including ours.

With no previous experience required a tandem skydive is a popular choice for those chasing some excitement and adventure.

You’ll be attached to an instructor who is in complete control of your jump throughout so all you’ll need to do is kick back and enjoy the ride! If you would like to take part in a skydive for RP Fighting Blindness,

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The RP Helpline 0845 123 2354

all you have do is register your place and raise a minimum of £395 in sponsorship.

A Tandem parachute jump is suitable for sighted, visually impaired and blind people alike, and is a truly exhilarating experience. With a number of regional locations to jump from across the UK, there’s nothing stopping you!

Further details can be found on our website under the fundraising section. Information about how to register can also be found online, or email michelle@rpfightingblindness.org.uk or call 01280 821334 if you want to discuss any aspects of this exciting fundraiser!

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NEWS

Recycle for RP! Recycle your old inkjet printer cartridges to raise money for RP Fighting Blindness! Just pop your old used inkjet cartridge into one of our freepost envelopes and post it.

It’s as easy as that!

Please phone 01280 821334 to request freepost envelopes or alternatively bring your old cartridges with you to any RP Fighting Blindness-run event such as our annual conference, Patient Information Days or RP Seminars and give them to a member of staff.

You can also pass old mobile phones to any member of staff for processing, although sadly due to a change in Royal Mail postal rules, we can no longer accept them by post.

Cheque Notice Please note that cheques written to us should be made payable to RP Fighting Blindness, and not to BRPS or the British Retinitis Pigmentosa Society.

Our bank has instructed us that it will no longer be able to process cheques made out to our old name, which will mean us having to return incorrectly made out cheques.

Should you ever wish to confirm any of our details, such as contact information, addresses, our registered charity number, or anything else, you can call us on 01280 821334 or email info@rpfightingblindness.org.uk You can make payments to RP Fighting Blindness in a number of ways other than cheque; annual subscription payments can be made via Direct Debit, and you can also make payments over the telephone using your credit or debit card. www.rpfightingblindness.org.uk

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Your old car can fund our research If you have an old car that you no longer need, why not put it to good use? We will collect it from you and either sell it at auction or scrap it, then give the proceeds to RP Fighting Blindness. To find out more, call us on 0207 736 4242.

9 FREE COLLECTION 9 ANY CAR 9 COUNTRYWIDE £1 million raised for charity Making a difference, one car at a time www.giveacar.co.uk

Giveacar is a non-profit social enterprise supported by over 1,000 UK charities. Giveacar Ltd, Riverbank House,

1 Putney Bridge Approach, London SW6 3JD. Registered as a Company Limited by Guarantee in England and Wales, No. 7128385.