Look Forward
Issue 159 May 2016
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!
Contents
AGM Notice
RPFB Annual Conference
London Marathon Success
Euro 2016 Fundraiser!
Meet the Fundraising Team
Stakeholder Liaison Group Meeting
Modified Glass
RP Seminars
Optogenetics Trials
Newcastle Patient Information Day
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 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
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.
RP Fighting Blindness funds medical research into retinitis pigmentosa and also offers a range of information and support services to patients and their families.
PO Box 350
Buckingham, MK18 1GZ
E:
T: 01280 821334 (OFFICE)
T: 0845 123 2354 (HELPLINE)
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.
Agenda for RP Fighting Blindness AGM
Chairman’s welcome
Introductions
Apologies
Annual Report and Accounts for 2015
Introduction
Questions from the floor
Resolution: to adopt the Report and Accounts 2015
Resolution: To appoint Davies Mayer Barnett as auditors
Resolution: The Reappointment of trustees.
The following trustees retire by rotation and are standing for re-election:
Roger Backhouse
Colin McArthur
Lucy Withington was appointed trustee by the board since the last AGM and so retires but is standing for re-election.
Any other business
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 Fighting Blindness in writing. This must state your name and address, the identity of the person you wish to elect to act for you and the meeting at which you are giving them permission to vote on your behalf.
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
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 alike, it is essential that places are booked, as seating and catering arrangements are made in advance.
Please contact head office on or call on 01280 821334 to confirm the number of places required. Non-members 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.
Conference Programme 18 June 2016
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
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
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. 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.
17:15 Event close
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 mages 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:
Transport - car, boat, aeroplane, bicycle, train, road, motorcycle, bus
Environment - outdoor, mountain, tree, snow, sky, ocean, water, beach, wave, grass
Sports - tennis, swimming, stadium, basketball, baseball, golf
Food - ice cream, sushi, pizza, dessert, coffee
Appearance - baby, eyeglasses, beard, smiling, jewellery, shoes, selfies.
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 visually impaired people should have equal access to the content posted online. Sighted people know who is
in many of the photos they see, so blind people should also be allowed that same privilege, he believes.
“I feel I have a right to that information,” he says. “I am asking for information that is already available to other people to be revealed to me. So I see it as a matter of fairness.”
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!
Team Blind as a Bat was put together by Roger Backhouse, who has RP himself and is a trustee and long-time supporter of the charity; he ran the London Marathon for RP Fighting Blindness in 2010 with his brother Oliver, an eye surgeon in Leeds, but this year decided to take on an even bigger challenge for the charity’s fortieth anniversary and put together an entire team of runners!
Notable team members included Lord Coe’s son Harry, plus four visually impaired runners and their guides. The team is raising a combined £175,000 through personal and corporate sponsorship.
The money raised will support Professor Robin Ali at the UCL Institute of Ophthalmology, world respected medical researcher and leading expert in the field of gene and stem cell therapy. Roger and his brother raised money for the start of a pioneering five year gene therapy research project of Professor Ali’s in 2010. The money raised by Team Blind as a Bat will be contributing to building a programme of clinical trials.
RPFB staff manned a cheering point at the mile 13 marker of the route, and were able to encourage our runners as they came past. Others were waiting at the finish line to offer congratulations and directions to the Runners’ Reception.
The Runners’ Reception we held at St James Court Hotel was well attended by our participants and their supporters; the refreshments and post-race massages were most welcome! There was quite the party atmosphere at the hotel and everyone agreed it was the perfect way to wind down after the race.
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.
Without you, none of it could be possible! A special thank you must go to Hannah Kenny, who volunteered as massage therapist on the day, helping soothe our
runners’ tired feet and calf muscles!
If you want to support Team Blind as a Bat, you can do so by sponsoring them on their JustGiving page, which can be found at the foot of this page.
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
Sponsor Team Blind as a Bat by visiting www.justgiving.com/blindasabat2016
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!
The special pack will include:-
A Euro 2016 themed Quiz with a set of European based questions both sporting and general knowledge questions
A Euro 2016 Sweepstake kit - get your colleagues involved: there will be a winner’s sweepstake along with another for the time of the first goal for 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
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 team of gingerbread footballers in your team’s colours!
The RP Fighting Blindness fundraising pack will be available to download from our website from late May but you can register your interest by emailing and we will email the pack to you in late May.