Look Forward
Issue 152 September 2014
Encouraging News From Researchers. Several different research projects
showing promise
The past months have seen many encouraging stories in the media about blindness
research, covering both technological development and gene therapy research. We
are excited to be part of some of these projects ourselves, and look forward to
updating you as they progress. The charity is already preparing for 2015, so read on
to learn more about what we have planned!
Contents
RPFB Annual Conference Roundup
Three Peaks Challenge 2015
DNA Sequencing Project
Retina International Conference Roundup
Smart Glasses News
RP Genome Project
Tough Mudder Challenge
Patient Information Days
Letter from the Chief Executive David Head MBA
It’s only a few months since I penned my last Letter from the Chief Executive, but
we’ve done much in that time.
Our Annual Conference and AGM in June proved a great success, with a number of
fascinating speakers and presentations; we held a Helpline Volunteer Training
Weekend in August, attended the Retina International Conference in Paris and of
course have been holding fundraising and awareness events across the country.
Research stories have been hitting the headlines recently – from technologies such
as ‘smart glasses’, to the news that Britain will be taking a lead in genetic research,
with the announcement of a project to map 100,000 complete DNA code sequences.
These are exciting times for us, and we are increasingly seeing the general public
taking more interest in such research, in turn raising awareness of conditions such
as RP and encouraging fundraising.
I hope you find this bumper edition of Look Forward an interesting one - we had so
much to share with you we had no choice but to add several extra pages this time!
Obviously we’re unable to share everything that’s going on in here, but aim to keep
you abreast of the most important news.
Don’t forget though, you can always keep up to date with our latest news on the RP
Fighting Blindness website, which can be found at ww.rpfightingblindness.org.uk
Should you have any news or think of anything you think we should cover in the next
edition of Look Forward, please email our Communications Officer Thomas O’Neill
on tom@rpfightingblindness.org.uk with your suggestions.
National Raffle Tickets
With your last edition of Look Forward you received ten of our National Raffle tickets.
We’ve already seen many of these have been purchased, raising thousands of
pounds for the charity’s work; thank you to all those who have already taken part, or
sold them to friends and family. The National Raffle, which will be drawn in
December, is an important fundraiser for the charity and offers some great prizes!
If you want to buy more tickets, please contact us on 01280 821334, but if you don’t
intend to either buy or sell your raffle tickets on, please do send them back to us, so
we can sell to others.
1st Prize – £200 of High Street vouchers, as chosen by the winner
2nd Prize – £100 of High Street vouchers, as chosen by the winner
3rd Prize – £50 of High Street vouchers, as chosen by the winner
Plus other exciting prizes!
Retinal Awareness Group (RAG) meeting 2015
The Retinal Awareness Group (RAG) is holding its annual Blackpool Weekend
conference at the Carousel Hotel across 17 - 19 April 2014.
The RAG social and activity weekend regularly attracts over 100 attendees, some
excellent medical speakers and a wide range of activities. RAG also aims to provide
information and advice about living with RP, Usher’s Syndrome and many others.
The cost per person for a double or twin room is £155, which includes two nights’
bed, breakfast, evening meal, lunch on Sunday and servings of tea and coffee over
the weekend. A full programme of speakers and activities will be made available,
once confirmed, on the RP Fighting Blindness website. To book your place, please
contact the Carousel Hotel on 01253 402642.
The RP Fighting Blindness Annual Conference 2014
Saturday 20 June 2014, saw the 38th Annual Conference of the charity take place.
The event, held at the prestigious Pullman Hotel in London’s Euston, proved a great
success with over 150 delegates attending to hear the latest research news, meet
our trustees, attend our formal AGM and hear from our guest speakers.
This one day event has long since become a key entry in the RPFB calendar; the
conference is the biggest gathering of RP patients in the UK each year, and many
attendees find our keynotes and guest speakers’ presentations of great personal
interest.
The day was introduced by RP Fighting Blindness’ Chief Executive David Head,
before the first guest speaker Annalisa D’Innella, RP patient and writer, gave the
audience an insight into what has inspired her success. Following this Keith
Valentine, Director of Empowerment at the Thomas Pocklington Trust gave an
engaging presentation entitled Empowerment for Those Facing Sight Loss.
The RP Awards, hosted by RPFB trustee Roger Backhouse, were announced before
the delegates enjoyed lunch; the RP Awards are made each year across a number
of categories to members and volunteers who have gone the extra mile to assist the
charity in its aims. For the full details of the nominees and award categories, please
visit the RP Fighting Blindness website. This year’s winners were:
The Roger Green Award for Special Contribution to the
Charity - Kate Samwell
The John George Award for Volunteering - Steve Goulden
The RP Fundraiser of the Year Award - Jon Bagshaw
Winner of the RPFB Short Story Competition - Joe Rizzo-Naudi
After a delicious buffet lunch, the John Marshall Award for RP Science was
presented, by the award’s namesake and RPFB trustee, Professor John Marshall
MBE. Dr Rachael Pearson of the UCL Institute of Ophthalmology was named winner
of the award for her research work into RP.
Following this, Professor Paul Bishop, the head of our Medical Advisory Board
introduced our medical speakers; Professor Eberhart Zrenner, Professor of
Ophthalmology at the Institute of Ophthalmic Research, University of Tuebingen and
Professor Majlinda Lako, Professor of Stem Cell Science at the Institute of Genetic
Medicine, Newcastle University, ahead of their fascinating presentations, Technology
in the restoration and preservation of sight and Prospects for stem cell therapy for
retinal degeneration respectively. These talks gave the delegates much food for
thought ahead of the interactive question and answer session that followed.
The ever popular RP Question Time proved a hit, with our keynotes speakers
Professors Zrenner and Lako joined by RPFB trustee Professor John Marshall MBE
from the UCL Institute of Ophthalmology and Dr Rachael Pearson, also of the UCL
Institute of Ophthalmology. They took questions from the floor about many aspects
of RP research and shared their theories and opinions about different scientific
developments currently underway.
As is our usual format, the event closed with the organisation’s formal AGM, at which
members were invited to vote upon certain resolutions, preceded by our Chairman’s
Conference Address. Our chairman, Mr Don Grocott, expressed his pleasure at the
number of delegates who attended the conference, and reminded our members how
far the charity has evolved from its early roots.
Overall, it was unanimously agreed that day was a great success, proving both
factually enlightening and very enjoyable. We will be providing information about the
next RPFB Annual Conference, due to be held on 20 June 2015, closer to the time.
Recordings of the sessions from the 2014 conference are available on the RP
Fighting Blindness website.
Three Peaks Challenge 2015
Would you like take part in an amazing challenge, and help raise money for RPFB at
the same time? The Three Peaks Challenge will run from 20 July to 25 July 2015
inclusive and take in Mount Snowdon, Scafell Pike, and the mighty Ben Nevis.
As the three highest peaks in England, Wales and Scotland, this represents an
exciting challenge to both visually impaired and fully sighted participants alike. The
total distance walked will be an estimated 26 miles with a total ascent of 9,800 feet.
We are looking for 40 people to join us on the challenge, with a mixture of visually
impaired and fully sighted participants. The fundraising target is very achievable at
£1,300; this must be paid by the end of 2015. A £100 registration fee is also payable,
which is separate from the sponsorship costs.
Those who have taken part in previous RPFB fundraising challenges, and have
raised their full sponsorship targets in the past, are not required to pay the £100
registration fee. These previous challenges include: London Marathons, The Sahara
Trek 2009, Namibia 2010, Iceland 2011, The Coast to Coast 2012, The Tandem
Challenge 2013 and the Sahara Trek 2014.
Accompanying the party will be a doctor, an experienced expedition leader and
David Head, RPFB’s Chief Executive. Added to these will be a local guide at each
site for maximum safety.
The planned itinerary for the challenge is as follows:
Monday - Travel to Mount Snowdon
Tuesday - Scale Mount Snowdon and travel to Scafell Pike
Wednesday - Scale Scafell Pike
Thursday - Travel to Ben Nevis
Friday - Scale Ben Nevis
Saturday - Travel home
The challenge will be rounded off with a celebratory meal and a chance to relax with
one another before the journey back down south!
The coach will depart from London on the morning of Monday 20 July, making its
way northwards towards Snowdon, stopping at several prearranged pick-up points.
The exact location of these pick-up points will be confirmed in due course. The
process will be reversed on the way back, at the same points.
Hotel accommodation, coach transport and all meals except evening meals will be
included in the registration fee and sponsorship payment. Breakfast and packed
lunches will be provided. Rooms will be twin, or double if appropriate. We would
encourage people to sign up in pairs due to this, but we are happy to team people up
for accommodation purposes. Visit the RPFB website to download the Registration
and Medical forms, or alternatively contact Michelle Carter at Head Office on 01280
821334.
Project Maps 100,000 DNA Sequences
A landmark project to map 100,000 complete DNA code sequences is destined to
make Britain the world leader in genetic research on cancer and rare diseases, the
Prime Minister announced in August. David Cameron made the prediction as he
announced a package of deals worth £300 million that will secure the future of the
work, expected to be completed by 2017.
Nothing on the scale of the 100,000 Genomes Project has ever been attempted
anywhere before. Over the next four years, about 75,000 patients with cancer and
rare diseases, plus their close relatives, will have their whole genetic codes, or
genomes, sequenced. Cancer patients will have the DNA of both healthy and tumour
cells mapped, making up the 100,000 total. Scientists expect the project to be pivotal
to the development of future personalised treatments based on genetics, with the
potential to revolutionise medicine.
A £78 million partnership between Genomics England, the body set up by the
Department of Health to oversee the project, and the Californian DNA sequencing
technology company Illumina was unveiled by Mr Cameron last month. Illumina,
originally “spun out” by Cambridge University scientists, will invest around £162
million into the project over its lifetime.
Pilots have been set up at centres across England - including sites in Newcastle,
Cambridge and London - and the first genome was sequenced on 30 May. The
genome of a patient’s tumour will be scoured for differences with the genetic code of
their healthy tissue and people with rare diseases, usually children, will have their
DNA compared with that of close relatives. University scientists and drug companies
will be allowed to access the data for their research. They argue that understanding
DNA will soon play a role in every aspect of medicine from cancer to cardiology, with
cancer being one of the main areas the project will focus on.
Mr Cameron said: “This agreement will see the UK lead the world in genetic
research within years. I am determined to do all I can to support the health and
scientific sector to unlock the power of DNA, turning an important scientific
breakthrough into something that will help deliver better tests, better drugs and
above all better care for patients.”
Among the genetic mutations being examined by the project are some of those
which cause RP. Professor Graeme Black, strategic director at the Manchester
Centre for Genomic Medicine, said it was a “very, very exciting development” in the
search for a possible treatment or cure.
He is already leading the largescale RP Genome project funded by RP Fighting
Blindness and Fight for Sight to help the country’s leading centres in retinal research
better collaborate to exploit advances in genetic testing. Professor Black said that
would operate in conjunction with the 100,000 Genome research and was “a model
for how national collaboration could be brought to bear on this problem”.
Speaking after attending the signing of the agreement at Downing Street, he said: “It
is clear that genomics has enormous power to improve the diagnosis of rare
diseases such as RP and that genetic discoveries will facilitate improvements in
treatment and management.”
RP Fighting Blindness chief executive David Head said: “For people faced with
blindness as a result of inherited retinal dystrophies, this is really important. There
are a very large number of genes, which if mutated can cause sight loss - perhaps
500 or more. At the moment only about 200 of these have been identified, and it is
exactly this type of work that will lead to the discovery of the others, and the many
different mutations that are responsible.”
Dolores Conroy, director of research at Fight for Sight said: “It is clear that this
investment in genomics in the UK will make a major impact - not least in the vision
field where there are so many rare eye diseases. This funding could not only lead to
better screening for genes but could significantly speed up the development of new
therapies.”
Retina International18th World Conference Roundup By Stephen Jones, RPFB
Trustee and RI Representative
The conference, hosted and organised by Retina France, was held from 26 to 29
June in Paris. Two business days for delegates preceded the main conference on
the Saturday and Sunday (public sessions). The official delegates of RP Fighting
Blindness were David Head, Chief Executive and Stephen Jones, Trustee; several
other RPFB members also attended.
The Main Conference RI conferences are held once every two years and are the
only international patient-focussed conferences that exist. The fact that attendance in
Paris exceeded 1,000 people, drawn from more than 50 countries, indicates that
strong demand exists for such events by retinal dystrophy patients and their families.
Many top scientists from around the world gave up their weekend in order to deliver
papers to the conference. British scientists were very well represented amongst the
speakers and included Alan Bird, Robin Ali, Shomi Bhattacharya and Mike
Michaelides.
It was noted that Shomi had informed one of the early RI conferences in 1984 of the
discovery of the first RP gene and now, 30 years later, he gave an interesting paper
on the latest position regarding gene identification. He said that the number of IRD
disease-causing genes already identified exceeded 200, as shown on the Retnet
website. In answer to a question from the floor, he gave an educated guess that an
equal number of genes may still remain to be found. In other words the total number
of IRD disease-causing genes could be between 400 and 500. This was a higher
figure than many of us had heard before and these genes will mostly be at the
harder to find end of the spectrum.
Both the leading groups that have developed retinal prostheses gave presentations
to the conference, i.e. Second Sight of the USA and Retina Implant AG of Germany.
Both companies had patients in attendance who had been implanted with the
devices as part of clinical trials and it was very interesting to hear of their
experiences. Nobody is pretending that the devices currently available give anything
approaching normal vision but the patients all reported that what they could “see”
was better than being totally blind and helped them to find their way in unfamiliar
surroundings and some could identify objects on a table. A Dutch patient fitted with
the Retina Implant product reported that in spite of undergoing nine hours of surgery,
he would have the device fitted again if offered the chance as the extra vision had
been a “wonderful experience”. A panel of three patients fitted with Second Sight’s
Argus II product described benefits such as being able to distinguish a pavement
and road edge, avoiding street furniture and general improvements in mobility.
Many of the papers presented at the conference focussed on the ongoing clinical
trials in various parts of the world which now number more than 20. A few of the
highlights included:
Robin Ali gave an update on gene therapy and stated that one of the main
challenges is to develop pharmaceutical grade vectors. His group will continue their
clinical trial work on RPE 65 and expect to start a trial on achromatopsia in 2016.
Robin also gave an update on his group’s work on stem cells and pointed to the
hope of starting a clinical trial in five year’s time. He emphasised the point that,
whatever the treatment, to get to licensed products in the future will require
pharmaceutical industry involvement.
Robert Koenekoop of the Montreal Children’s Hospital spoke about pharmacological
therapies and his work with the QLT company to develop a novel oral retinoid tested
on RPE65 and LRAT patients. Early results showed improvements in vision before a
decline set in to the former state. Further results are expected to be published
shortly.
Jose Sahel, Director of the Institut de la Vision in Paris spoke about a number of
clinical trials in which his team are involved, including the MERTK gene therapy trial
in Saudi Arabia on six patients, three of whom reported improved vision.
Abstracts of the congress sessions are available at www.retina2014.com and a
summary of research and clinical trials from Prof Jerry Chader’s presentation is
available on the RPFB website.
Business Days
The two business days, consisting of the RI General Assembly (GA) and the
Continuing Education Programme (CEP), are attended only by the official delegates
of the member organisations.
RI currently has 25 full members of which 22 were in attendance in Paris. A number
of member organisations from several other countries which are not yet full members
also attended as observers. The usual GA business of accounts, budgets and
reports was dealt with in the usual efficient way by Christina Fasser and her team.
Christina was elected to serve another two year term as President (voluntary post).
Steps are also being taken to establish an RI office with a paid senior executive
.
The morning of the CEP was devoted to the issue of registries and allied subjects
such as genetic testing. Experiences and approaches were described by speakers
from a number of different countries including the USA, Ireland, South Africa and the
UK (presented by David). Brian Mansfield, Deputy Research Manager of the
Foundation Fighting Blindness USA gave a presentation of a recent initiative under
the name My Retina Tracker which is a webbased facility where patients, and
clinicians, can record their data. This service is targeted not only at American retinal
dystrophy patients but also those from anywhere in the world. More information is
available at www.myretinatracker.org
The next RI conference will take place in July 2016 in Taiwan organised by Retina
Taipei assisted by long-time RI member, Retina Hong Kong. The last four RI
conferences have been in Europe so it is appropriate that the Far East is given a
turn. A great effort will be made to spread the message throughout the region and
the RP organisation in mainland China has already expressed strong support.
As an indication of the Taiwanese commitment, 96 of them were present in Paris,
including a choir of RP patients and medical students.
There is already a website in preparation for the 2016 event at
http://riwc2016.org/e_taa.php
Visually Impaired Man Sets Up Blindness Consultancy Business
From May 2014, Daniel Williams, aged 22, has been providing training and
consultancy services to businesses across the UK to help them improve their
knowledge and understanding of customers with a visual impairment.
Daniel who has RP, had difficulty in the past coping with his visual impairment and
not being able to enjoy the same experiences as his peers, such as learning to drive.
Since leaving University Daniel has worked but not sustained employment. He has
experienced some negativity from former employers who sometimes thought he was
less capable due to his visual impairment. These experiences motivated Daniel to
set up Visualise Training and Consultancy which aims to improve organisations’
awareness, knowledge and confidence when dealing with people with a visual
impairment. It delivers accredited training, premises accessibility checks and a
mystery shopper service provided by visually impaired people. It hasn’t been an easy
process but Daniel shows great determination.
Daniel explained: “The last six months have been difficult, facing a range of different
barriers trying to set up in business, however this didn’t stop me. There was no
option for me to give up as I wanted to pursue a career that I am passionate about,
which is making a difference within society for the better. I felt degraded by being
labelled ‘unable to work’ - this motivated me to strive towards achieving my dreams
and aspirations just like anyone else. I am determined to be successful and I will
keep working to achieve success.”
We wish Daniel every success in his new business venture and feel sure many
readers of Look Forward support his aims. You can visit the Visualise Training and
Consultancy website at www.visualisetrainingandconsultancy.co.uk
New Treatments on the Horizon to Treat Inherited Retinal Diseases
The National Institute for Health Research (NIHR) Horizon Scanning
Centre (HSC), has identified 40 potential new treatments which are currently being
developed for inherited retinal diseases in their latest horizon scanning exercise.
These potential treatments may be able to help thousands of patients.
Inherited retinal diseases are now the most common cause of blindness in working
age adults in England and Wales and the second most common in childhood.
Currently, there is no cure or treatment.
In 2012, RP Fighting Blindness took part in the NIHR James Lind Alliance Sight Loss
and Vision Priority Setting Partnership looking to set priorities for eye research. In
this major consultation those with first-hand experience of sight loss (patients,
relatives, carers and eye health professionals) were asked what were the most
important questions they felt should be addressed by medical research.
The top priority in relation to inherited retinal diseases was: “Can a treatment to slow
down progression or reverse sight loss in inherited retinal diseases be developed?”
For the first time the NIHR has been able to respond to patient priorities by
undertaking this horizon scanning exercise to identify the pipeline of possible
treatments. In addition, focus groups with patients and clinical experts, facilitated by
Fight for Sight, were held to draw on the knowledge of people with experience of
inherited eye diseases and their views of potential treatments.
Joanna Smith, Senior Analyst at the NIHR HSC said: “We consulted clinical experts
and developers, searched specialised databases and other online sources to find
what is being developed. We found 40 new and emerging technologies. This is the
first time we have asked for a patient perspective on our search. Their comments
gave a totally different perspective in some areas to the clinical experts we spoke to
but there were also some strong synergies.”
Michele Acton, Chief Executive of Fight for Sight said: “When we consulted with
patients, relatives, carers and eye health professionals about their research
priorities, we committed to taking them forward. It is encouraging to know how much
research is going towards addressing inherited eye diseases, for which there are
currently no treatments. With further support and funding these therapies and
technologies could have a major impact on people’s lives. At Fight for Sight we are
funding eye research at 35 different universities and hospitals across the country.
We want to create a future everyone can see. We’re delighted that the latest NHIR
HSC horizon scanning exercise is showing a range of promising treatments for
inherited eye diseases.”
“This summary of the research taking place to tackle inherited retinal dystrophies is
an important piece of work and I commend Birmingham University and the NIHR on
the output,” commented David Head, Chief Executive at RP Fighting Blindness. “It
reinforces our view that we are getting ever closer to treatments and to see the sheer
number of lines of research being followed up is immensely motivating for us and for
RP patients. It also underscores the need for increased investment in retinal
research, by the public sector, institutions, commercial organisations and medical
research charities, and we call on all to do
‘Smart glasses’ help fix failing vision
Researchers from Oxford University say they’ve made a breakthrough in developing
smart glasses for people with severe sight loss
The glasses enhance images of nearby people and objects on to the lenses,
providing a much clearer sense of surroundings. They have allowed some people to
see their guide dogs for the first time. The Royal National Institute of Blind People
says they could be “incredibly important”.
“From what we’ve seen so far they could offer some great independence for blind
and partially sighted people to get out and about and carry on normal lives”, said
John Worsfold of the RNIB.
Lyn Oliver, 70, was diagnosed with RP in her early twenties. She can spot
movement but describes her sight as ‘smudged and splattered’. Her guide dog Jess
helps her find her way around but obviously can’t convey other information about her
surroundings.
The researchers at Oxford University have developed a way to enhance residual
sight by developing smart glasses. They are fitted with a specially adapted 3D
camera. The images are processed by computer and projected in realtime on to the
lenses - so people and objects nearby become bright and clearly defined.
Dr Stephen Hicks, from the University of Oxford, who has led the project, says they
are now ready to be taken from the research setting to be used in the home. “If
you’re walking around you’re able to navigate doorways, and see hazards on the
floor that might trip you up. So you can become more independent and walk around
with greater ease.”
He says there has been a great response from people who have worn them. “People
have loved them. They remark how much they can see now. They can see details in
faces; they can see their own hands. People have commented how they’ve seen
their guide dog for the first time. It’s a real enabler.”
Lyn Oliver tried the latest glasses in Oxford’s covered market, a busy enclosed
space with lots of potential obstacles. Soon she found her surroundings coming into
focus. She said the glasses could help in many different settings; “This way I could
find my way to a door, around tables and out. Find the stairs and up the stairs.”
The headset is still substantial, and connected by cable to a laptop in a backpack.
But the researchers are confident in time they can be made the size of normal
glasses. Eventually, they say, they could be available for the cost of a mobile phone,
saving the NHS millions of pounds by preventing falls.
They will start making an initial batch of 100 sets later this year, which will be offered
to blind and partially sighted people to use in their daily lives. If that goes well they
will start to produce larger numbers over the next couple of years.
The Royal National Institute of Blind People has followed the project closely. John
Worsfold from the RNIB says they could make a massive difference to people’s lives.
“I think these could be incredibly important. From what we’ve seen so far they could
offer some great independence for blind and partially sighted people.”
David Head, our Chief Executive, commented that it was exciting news, “The
development of such technologies is of course hugely exciting, and we at RPFB are
closely following the progress of smart glasses, and a number of other technologybased projects. It’s always encouraging to hear such news and we hope to be able
to update our members on smart glasses, and other ground breaking technologies in
the near future.”
Largest Ever Grant for Influential Project The RP Genome Project
As was announced briefly in the summer issue of Look Forward, in April our board of
trustees approved our largest ever research grant, of nearly £1.2m.
This money, £250,000 of which is coming from our funding partner Fight For Sight,
will fund a consortium of four research centres to deliver The RP Genome Project.
The principle behind the project is to improve data sharing and other collaboration
between research teams, and in particular to ensure that data generated as a result
of increased levels of genetic testing is used - with appropriate permissions - to
support research work. This will support gene hunting teams in their search for the
remaining genes that cause retinal dystrophy, and will also help to ensure that
groups working on clinical trials have access to information to identify suitable
patients, and contact with them.
Scientists at Leeds University Eye Hospital, UCL Institute of Ophthalmology in
London, Manchester University Eye Hospital, and Oxford University Eye Hospital are
all committed to working more closely together as a result of the programme, under
the leadership of Professor Graeme Black in Manchester.
David Head, Chief Executive at RP Fighting Blindness, said “Not only is this our
largest ever investment - over three years - it is also the most influential project we
have initiated and funded. It will influence the way that patients and patient data are
handled in the future, and break down the barriers that prevent clinical genetic
testing data being available to RP research teams. We are also very proud and
pleased to highlight that the project is a demonstration of collaboration in action for
the benefit of patients - both on the funding side with us working closely with Fight
For Sight, and of course on the scientific side with four centres - perhaps more in the
future - working together.
The project is due to start in October of this year and will start with the appointment
of a Project Coordinator by Manchester University. It will be overseen by a
Scientific Committee and also guided by a Strategic Advisory Committee, which will
include patient representation.
The RP Genome Project is targeted with stimulating a ten-fold increase in clinical
genetic testing for inherited retinal dystrophies, and supporting the discovery of five
to ten new retinal dystrophy genes for each of the three years of the programme. To
put this into context, previously projects designed to find one gene may have taken
two to three years and cost perhaps £150,000 or more. This is made possible by
collaborative working coupled with huge advances in the technology used for genetic
testing and analysis.
The project also ties in with the government-funded 100,000 Genomes Project,
which is working to map, in full, 100,000 individuals genomes. Our aspiration is that
people affected by inherited blindness and their families should be included as much
as possible in that broader project and the data produced by the programme will be
‘plugged in’ to the government project by the Manchester laboratories.
Professor Graeme Black and his team have been funded by RP Fighting Blindness
for the last decade to develop genetic testing technologies, analysis and protocols.
“The fact that this is culminating in a major project with direct patient benefit is very
significant”, said David, “It demonstrates how important the influence of a patient
organisation and patient generated research funds can be”.
Updates on the programme’s progress and results will be included regularly in future
issues of Look Forward. Professor Black is also presenting at the RP Patient
Information Day in Birmingham on October 9th this year and will undoubtedly
discuss it and be available to answer questions. Places can be reserved at this free
event by contacting Head Office telephone, email or post.
Blind Veteran’s Parade Honour
A visually impaired veteran with RP has spoke out about how “honoured” he was to
be the official standard bearer for Blind Veterans UK in this year’s Armed Forces Day
celebrations.
Brian Eldridge, who is 67, has RP and is from Chesterfield, marched with the
charity’s official standard during the opening parade of the event in Stirling, Scotland,
on June 28.
He said: “When the charity approached me and asked me to become a standardbearer, I didn’t have to give it much thought - I said yes straight away. I am very
proud that Blind Veterans UK asked me and the fact that I am able to represent the
charity on Armed Forces Day is a real honour. It is a great opportunity to celebrate
the Armed Forces and to spend time with other veterans - you still get that sense of
camaraderie you did when you were in the Forces.”
Brian joined the Royal Army Veterinary Corps in 1966 and served in Hong Kong,
Germany and the UK before he was discharged in 1975. It wasn’t until later in life
that he began to lose his sight due to RP. He was eligible for vital support from
Blind Veterans UK, as the charity cares for all vision-impaired ex servicemen and
women regardless of when or how they lost their sight.
Brian has received free specialist services and support from the charity since 2006,
to help him and his family adjust to life with sight loss. He said: “Blind Veterans UK
has been tremendous; they have helped me to become independent again, despite
my sight loss. The encouragement that they have given me is just brilliant; I can’t
sing their praises enough.”
“With their encouragement I have built up my confidence and my skills, I don’t
hesitate now to go out alone, and also I’m now able to enjoy using my computer
thanks to the IT training the charity has provided.”
The event in Stirling included a parade of serving personnel, veterans and cadets as
well as military-themed events and displays.
The charity is currently running it’s No One Alone campaign to find the estimated
68,000-plus blind ex service men and women who, like Brian, are eligible for the
charity’s services, but are not aware of it.
Croydon Local Group
Just a quick reminder to people in the Croydon area; the next Croydon
Local Group meeting will be held on Saturday 04 October from 2.00pm to
4.00pm at Croydon Visual, 72 - 74 Wellesley Road, Croydon, Surrey. Free
refreshments will be available. Please bring used, cleaned foil, stamps and old
mobile phones to the meeting as RPFB can have these recycled for cash!
Foreign Currency Appeal Update
As most of you will be aware, we have been appealing for any foreign currency lying
around in a drawer or flight bag from your last holiday, and asked you to send in any
old notes or coins from defunct or outdated currencies.
This has appeal has been going very well, and has generated well over £1,000 from
your generous contributions. Ron and Gina Pritchard, longstanding members of the
organisation, went one step further, took on the mantle in their area and appealed for
foreign currency through local publications. We want to thank them publically for this
amazing effort which has raised a large amount for us!
Due to the relatively small value of each donation of coins and notes, it’s
uneconomic for us to post a thank you card for each one – we would like to let
everyone know however, that every coin is valued, and we appreciate your support.
If you have any old coins and notes you’d like to donate, please send them to:
RP FCA PO Box 350 Buckingham MK18 1GZ
Thanks for your support!
Anglia Ruskin University Research Project
The Department of Vision and Hearing Sciences at Anglia Ruskin
University are recruiting people with impaired peripheral vision to take part in a
research study to determine the most appropriate ways of assessing the field of
vision.
The knowledge gained from the study is intended to lead to quicker and more
efficient testing of visual fields and management of patients with low vision in the
future. The research is funded by the College of Optometrists and has been
approved by the Anglia Ruskin University Ethics Committee.
If you decide to participate in this research, you would be asked to come to the
Anglia Ruskin University Eye Clinic in Cambridge for a single two hour appointment.
You would be asked to do the following tests, none of which involve touching your
eyes or putting drops into them:
Complete a questionnaire about your vision and any difficulties you may have
Check your ability to see: objects to the side (Visual fields), small objects (visual
acuity) and faint objects (contrast sensitivity) and how well your eyes work together
(binocular vision).
Your travel expenses to and from the university will be reimbursed.
If you would like to find out more about participating in the study, please contact
Hikmat Subhi at hikmat.subhi@student.anglia.ac.uk or on 01223 698070.
You can also write to Eastings 201,Eastings Building, Anglia Ruskin University, East
Road, Cambridge, CB1 1PT.
Virgin Money London Marathon 2015
RP Fighting Blindness enjoyed huge success at the Virgin Money London Marathon
2014 in April.
The London Marathon is a prestigious event and a must-do for all people who enjoy
running! It’s a great way of raising money for our cause, while undertaking a fantastic
personal challenge. We have some people who run year after year for us, because
the buzz of completing after training so hard is unbeatable. We want the 2015
London Marathon to be our best yet - and we need you!
Any questions you have about the race, Michelle Carter is the go to lady - she’s been
managing RPFB’s presence at the race for many years and there’s nothing she
doesn’t know! Whether visually impaired and running with a guide, fully sighted, a
long-time marathon runner, or a casual runner wanting to up your game, this is the
event for you. We only have a limited number of places, so please register your
interest now!
Equally, if you have been lucky enough to get a ballot place and would like to be part
of Team RP, drop us line on michelle@rpfighting blindness.org.uk and we will
add you to our great line up!
Skydiving World Record
Saturday 14 June saw hundreds of thrill-seeking participants take to the skies across
the UK in an attempt to break the skydiving World Record for most number of
parachuters jumping at once. We’re delighted to announce that the previous record
was smashed with an incredible 323 supporters jumping for some amazing causes,
including RP Fighting Blindness. Around £6,000 was generated in sponsorship
money for the charity, with more expected in over the coming weeks. Want to be part
of next year’s World Record breaking attempt? Contact Michelle Carter at Head
Office for further details!
The Royal National College for the Blind
RNC is the UK’s leading specialist residential college for people aged 16+ who are
visually impaired. With over 140 years’ experience, the College stands firm in its
original aim to enable each and every student to achieve their potential and engage
fully in their community.
RNC offers a wide range of qualifications and is home to the UK’s first Sports
Academy for blind and partially sighted players of football, goalball, and golf. Support
and teaching are provided by a dedicated and highly skilled team of specialist staff
using first class resources and facilities. The college also offers a comprehensive
work experience programme, together with full transitional support for students
wishing to progress into work or university.
In addition to gaining valuable qualifications and experience, students and trainees
learn essential independence and mobility skills, ensuring they have every
opportunity to live as independently as possible and achieve their individual goals.
The College campus is fully accessible and facilities include: modern and fully
inclusive teaching and learning areas, information technology equipment
incorporating a full range of assistive technology, custom designed residences to
allow for independent living, the Chapel arts and media centre and thePoint4 sports
and leisure facility with hydrotherapy pool and spa.
RNC maintained its ‘good’ Ofsted rating during the last inspection in
October 2013.
Potential students and professionals are welcome to visit the college for an informal,
personalised tour. Call the Student Enquiries line on 01432 376 621, email
info@rnc.ac.uk or visit the website www.rnc.ac.uk for more information about RNC
and to book a tour.
Challenge Wales: Turning the Tide
Funded Sailing Opportunities for Visually Impaired Young People Challenge Wales
is a 72-foot round-the-world yacht whose home port is Cardiff, South Wales. The
boat is operated by a charity; also called Challenge Wales, with the aim of teaching
young people (aged 12 - 26 years) life skills through sailing.
The charity is offering fully-funded voyages that will enable visually impaired young
people in South, West and North Wales to develop confidence, have the same
experience as anyone else on board and give them the opportunity to make new
friends. The funding covers the full cost of the voyage for the visually impaired young
person along with a visually able ‘buddy’. This will allow them to work together as a
team, taking part in everything from hoisting the sails to steering the boat.
Challenge Wales is a charity dedicated to providing young people a chance to
develop their self-esteem and skills of team Challenge Wales works with schools,
groups and young people’s organisations but also offers big boat sailing
experiences, a variety of sailing trips including milebuilder opportunities and RYA
sailing qualifications for both young people and adults. Over the last two years it has
delivered nearly 1,500 sailing days with young people, working with groups including
the Air Cadets, Rotary young carers, National Autistic Society and several secondary
schools from across Wales.
Contact Challenge Wales on 02920 220266, email reservations@challengewales.org
or visit www.challengewales.org for
further information.
Tough Mudder 2015
If you want to raise money for RP Fighting Blindness next year while undertaking a
fantastic physical challenge, look no further than
Tough Mudder!
Tough Mudder is a 10-12 mile obstacle course designed by the Special Forces to
test all-around strength, stamina, teamwork, and mental grit. A number of different
course types are available, in different locations across the country to test your
abilities!
Everyone is welcome and we have guaranteed places!
With 16 dates and eight venues across the UK, all you need to do is choose your
date, sign and return your form and get prepared.
London West 02 & 03 May
Birmingham 30 & 31 May
Scotland Dumfries & Galloway 20 & 21 June
With five further venues to be confirmed.
Interested in taking part? For a guaranteed place, we require a holding donation of
£50, with a commitment to raise a minimum of £400 in sponsorship.
Further information and registration forms are available by contacting
Michelle Carter at Head Office by calling 01280 821334, or emailing
michelle@rpfightingblindness.org.uk. Learn more about Tough Mudder by visiting
www.toughmudder.co.uk
RP Patient Information Days
Now in their fourth year, our free Patient Information Days are a highlight in the RP
Fighting Blindness calendar.
These events have proved to be very popular, and are a key part of our
Information & Support Services, making sure that patients get good quality
information about RP and RP research from top clinicians and researchers. We are
very grateful to Second Sight, which is sponsoring these events. In addition, patient
speakers at both events will be presenting their own experience of retinal implant
technology.
Southampton: 08 October at The Grand Harbour Hotel, West Quay
Road, Southampton, SO15 1AG hosted by Prof Andrew Lotery
Birmingham: 09 October at The Postgraduate Centre, City Hospital,
Dudley Road, Birmingham, B18 7QH hosted by Prof Paulo Stanga
Professor Lotery is a highly respected retinal specialist - both a researcher and a
clinician, based at Southampton General Hospital /University of Southampton. He
will be hosting the Southampton event and presenting on the subject of stem cell
research and prospects for stem cell therapy in retinal dystrophy.
Professor Stanga is an eminent clinician and surgeon, being Consultant
Ophthalmologist and Vitreoretinal Surgeon at Manchester Royal Eye Hospital. He
has been working closely with Second Sight on the development of the Argus II
retinal implant and the associated surgical procedures. He will be hosting the
Birmingham event and will also present on his retinal implant work.
We have secured venues that will enable us to host up to 100 delegates in each
case. In 2015, assuming demand exists, we will be aiming to run similar events in
the north of the country and in Scotland.
Preliminary programmes for both days follow. Please be aware that this is subject to
change. The RP Fighting Blindness website will carry any amendments to
programme information.
RP Fighting Blindness Patient Information Day, Southampton
Wednesday October 08 2014 Supported by Second Sight Inc.
12:00 Welcome / registration / lunch
13:00 Welcome by David Head, Chief Executive, RPFB
13:05 Welcome from Professor Andrew Lotery, Event Host
13:10 Professor Andrew Webster: Genetics and RP
13:40 Professor Robert MacLaren:Gene Therapy as a Treatment for
Retinal Dystrophy
14:10 Professor Andrew Lotery: Stem Cells: Prospects for Therapy
14:40 Tea Break
15:00 Dr Yvonne Luo: Advances in Retinal Implant Technologies
15:30 Patient speaker to be confirmed
16:00 Ask The Experts, speakers’ panel for Q&A session, above speakers plus Mr
Andy Fisher, Rehabilitation Specialist for Second Sight Inc.
16:55 Closing remarks from Professor Lotery and Mr David Head
17:00 Reception and refreshments, opportunity to talk to speakers and fellow
patients
18:00 Event close
RP Fighting Blindness Patient Information Day, Birmingham Thursday October
09 2014 Supported by Second Sight Inc.
12:00 Welcome / registration / lunch
13:00 Welcome by David Head, Chief Executive, RP Fighting Blindness
13:05 Welcome from Professor Paulo Stanga, Event Host
13:10 Dr Denise Williams: Genetic Counselling and the Patient Experience
13:40 Prof Graeme Black: Genetic Testing for Clinical Reporting and Research
14:10 Dr Carla Mellough: Prospects for Stem Cell Therapies
14:40 Tea Break
15:00 Professor Paulo Stanga: Advances in Retinal Implant Technologies
15:30 Patient speaker to be confirmed
16:00 Ask The Experts, speakers’ panel for Q&A session, above speakers plus Mr
Andy Fisher, Rehabilitation Specialist for Second Sight Inc.
16:55 Closing remarks from Professor Stanga and Mr David Head
17:00 Reception and refreshments, opportunity to talk to speakers and fellow
patients
18:00 Event close
TV documentary about Retinal Implant Surgery
Optomen Television has been commissioned to produce a new documentary series
for ITV and they are seeking patients who are due to receive eye surgery this year or
by Spring next year.
In these three documentaries they will follow the real life journeys of people having
their sight, hearing or mobility restored through pioneering operations. They intend to
feature two stories in each one hour-long programme.
The aim of the series is to follow the stories of individuals going through medical
procedures to restore their sight/hearing/mobility, understand what it is like to live
with these conditions, follow the stories of the individuals as their lives are
transformed, raise awareness about the pioneering procedures available to help and
the conditions that can create loss of sight/hearing/mobility.
Optomen wants these to be honest, true accounts of these potentially life-changing
chapters in your lives. If you are interested in sharing your story, please contact
Angela (Producer) for a no obligation, friendly and confidential chat. Her email
address is angela.arora@optomen.com or you can call on 0203 227 5940.
If you’re under 18 please ask a parent / guardian to make contact first.
RP Fighting Blindness Short Story Competition
We had many entries for the first RP Fighting Blindness Short Story Competition,
and the winner was announced in June. Three entries were shortlisted before the
final decision was reached by our expert judges. These were: The Last of the
Yagimui by Joe Rizzo-Naudi, Milledgeville by Cynthia Morrison and Assumptions on
a Train by Andra Harte.
After careful thought, the winner of the Short Story Competition was announced as
Joe Rizzo-Naudi for The Last of the Yagimui. Congratulations Joe!
A Thank You
Following being presented with the Roger Green Award for Special
Contribution to the Charity at the last Annual Conference, Kate
Samwell, a long time and loyal member of the team at Head Office, wanted to
convey her personal thanks for the award:
I was delighted and surprised to receive the Roger Green Award for Special
Contribution at this year’s RPFB Conference and very much appreciated the gifts I
received. There have been many changes since I joined Lynda at Pond Farm
House in January 1994 and it’s been both a fascinating and rewarding journey. Over
the years, I have experienced friendship from the people I have come into contact
with - and to be honoured in Roger’s name is truly the icing on the cake! RP
research is at an exciting stage and I’m pleased to be able to continue working for
the charity, albeit in a different role. Thank you, too, to my colleagues for everything you are a great team.
Obituary
Former Chair of the then Woking and District Branch of BRPS, Dot Smith, recently
wrote to tell us that Loraine Hope, a founder member of the branch, passed away
peacefully on 16 July, after a long illness. She submitted the following obituary to us
in memory of Loraine and the work she undertook for the charity:
Loraine was the Secretary of the group for many years and her husband Bob was
also the Treasurer. Loraine and Bob worked tirelessly for the charity, never missing a
fundraising or social event, before eventually retiring to the South Coast. Loraine will
be remembered for her kind and caring ways, especially by members of the Woking
and District Branch. She also had a great sense of humour and fun; I for one will
miss her laughter. The way in which Loraine dealt with her illness over the past few
years is an inspiration to all who knew her; she really was a very special person and
will be sadly missed by all - especially her husband Bob and her family to whom we
send our condolences.
RP Helpline and Information Services
RP Fighting Blindness continues to provide support for people affected by retinitis
pigmentosa at times of emotional stress and practical difficulty. The RP Telephone
Helpline, Email Helpline and the Telephone Befriending Service are delivered by a
team of dedicated volunteers, all of whom have experience of dealing with the
condition themselves or within their family.
The RP Telephone Helpline answers some 1,000 calls and the email service handles
hundreds of messages each year; many from people who would not be able to
access this type of support anywhere else. The volunteers, who undertake regular
training, all either have RP themselves or are related to someone with RP. This
ensures users are communicating with skilled and empathetic volunteers every time.
Our Telephone Helpline number is 0845 123 2354, and our Email Helpline address
is helpline@rpfighting blindness.org.uk
Added to this, as many of you will be aware, the charity also provides an extensive
informative website about RP, regular magazines and news bulletins, leaflets,
factsheets, a film, social media and informative events, all developed to ensure
people with RP have access to good quality information. We regularly distribute
cards with the RP Helpline number and other contact information to hospitals and
eye clinics to ensure we outreach to as many people as we can who may be affected
by RP.
If you would like any of our informative materials yourself, or to help others
understand RP, please do contact Head Office on 01280 821334, and we’ll be happy
to provide these free of charge.
RP Fighting Blindness
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: info@rpfightingblindness.org.uk
T: 01280 821334 (OFFICE)
T: 0845 123 2354 (HELPLINE)
Social Media
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.