94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:23 Page 1
Look Forward Issue 148 September 2013 Registered Charity No. 271729
Inside New Constitution and Organisational Changes Page 3 The RP Conference 2013 Review Page 4 The RP Awards 2013 Page 6 Red Szell Old Man of Hoy Challenge Page 7
RP Fighting Blindness sails ahead! Charity agrees plans to develop projects and implement important organisational changes. The past few months have been incredibly busy for the charity, with research grants being approved, the 2013 Gene Team Appeal being completed, organisational changes being put in place and fundraising events all over the country! 2013 has simply flown by, with the rest of the year promising to be just as busy. Read on to discover what we’ve been up to and what’s on the cards for the rest of this year!
Research Grants Update Page 10 Case Study: Bakul Shah Page 12 Gene Team Appeal Update Page 16 BME Community Outreach Project Page 20 Round The Island Race Fundraising Page 23
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:23 Page 2
NEWS
Letter from the Chief Executive David Head MBA As mentioned on the front cover of this edition of Look Forward, the past few months for RP Fighting Blindness have been both very busy and productive. Our Annual Conference in London was a great success and the summer saw a huge number of community fundraising events and projects taking place. We’ve invested in our RP Helpline by providing intensive training for our volunteers and made a number of research grants to various institutions. We also have exciting news regarding the organisation and future of the charity, following a constitutional decision to change to a Charitable Incorporated Organisation (CIO). On a personal note, I’m absolutely delighted by the funds that have been raised so far this year for medical research and patient support and I would like to congratulate the many members, supporters and other fundraisers who have contributed their time 2
The RP Helpline 0845 123 2354
and energy to help beat RP. Should you have any stories or think of something you would like us cover in the Winter edition, please email our Communications Officer Thomas O’Neill on tom@rpfightingblindness.org.uk with your suggestions.
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)
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:23 Page 3
NEWS
Constitutional Change Approved by Members At the RP Fighting Blindness AGM on 22 June, members overwhelmingly voted in favour of the charity pressing ahead with significant constitutional change, enabling the trustees to go ahead with transferring the assets and operations of the charity to a brand new Charitable Incorporated Organisation (CIO). Currently constituted under a Deed of Trust dating back to 1976, the charity is in need of constitutional modernisation and this move will see the charity transformed from one that is significantly outdated to being at the forefront of change in the sector. The CIO is a new model form agreed with the Charity Commission and RP Fighting Blindness will be amongst early adopters of the format. Technically the change will involve setting up and registering a new charity, and then transferring everything across from the existing Trust. However, from a day to day operational standpoint members, donors and others will see little
practical difference. RP Fighting Blindness’ charitable objectives will not change – notwithstanding the introduction of more appropriate modern wording – and constitutional members will be offered the opportunity to retain a similar role in the CIO if they wish. David Head, Chief Executive said following the vote, “I am delighted with this important step in the modernisation and continued transformation of the charity, and also extremely pleased with the support and understanding from the voting members. RP Fighting Blindness is increasingly active, increasingly of profile, and increasingly engaged in more complex projects and contractual arrangements – this is undoubtedly the way forward”. RP Fighting Blindness now intends to complete the administrative processes involved with a view to completing the technical transfer early in 2014.
email: info@rpfightingblindness.org.uk
3
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 4
EVENTS
The RP Conference 2013 Members, patients, family and friends, supporters, clinicians and researchers alike attended the Pullman Hotel, London on 22 June 2013 to share information, research news and everything RP! This one-day event is always an important part of the RPFB calendar, bringing together over 200 hundred people to hear from our expert speakers, learn from one other, meet the RP Fighting Blindness office 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. We are delighted so many people came out for the conference this year and the general consensus was that the day was both informative and enjoyable. Members attended from across the UK with many taking advantage of the great weather and enjoying a few days in London afterwards! We also enjoyed scientific speakers in the afternoon. Professor Graeme Black presented the topic ‘What Next for Genetic Testing and Gene Hunting?’ and Professor John Marshall presented ‘Treatments: What does the Future hold?’ RP Question Time was also held, an interactive session in the style of BBC Question Time. This session, chaired by Professor Paul Bishop, proved hugely popular. The panel was compiled of Professor Andrew Webster and all our scientific and 4
Office Telephone 01280 821334
medical speakers from earlier in the day. Delegates were able to ask the panel all about any aspect of RP and receive expert responses and feedback.
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 5
EVENTS
We must extend our sincere thanks to the speakers who attended and provided such interesting content. Jayne George, Director of Fundraising at Guide Dogs for the Blind presented on the fascinating subject collaboration in the visual impairment charity sector and Georgina Hall, Consultant Genetic Counsellor, explained the Role of Genetic Clinics and the Genetic Counsellor. Special thanks must also be extended to ex-chairman of RP Fighting Blindness Sir Alan Rudge for presenting the RP Awards with Mrs Muriel George, Mr Colin McArthur and RP Fighting
Blindness founder Mrs Lynda Cantor MBE. To read about the lucky winners of the RP Awards 2013, please turn to page 6. The AGM session covered the formal business matters of the charity and, as detailed on page 3, most importantly covered the constitutional changes, which were approved. Overall the day was considered to be a great success and we very much enjoyed welcoming so many to London. The next RP Conference will be held on Saturday 21 June 2014. The venue will be announced as soon as possible. Watch the website for details! www.rpfightingblindness.org.uk
5
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 6
EVENTS
The RP Awards 2013 The Lynda Cantor Award We didn’t receive any nominations for the award for 2013, so we made a special one; the Team Manager of the Year award for Finlay McLeod who is 10 years old and has RP. A keen sportsman, he John George Award for wanted to run the BUPA 10k with Volunteering, presented by Mrs Muriel George his father; unfortunately he was This award was initiated several unable to because it has a years ago by Muriel George as a minimum age for participants of way of memorialising her husband 16. The family instead created John, who was a long standing and Team Finlay and ran it on his valued volunteer for the charity. 14 behalf. Finlay manages his team year old Niall Barker is not affected fantastically and we felt he by RP but has volunteered over the deserved recognition. last couple of years to help in any capacity needed at several of our The Roger Green Award for Special events, was this year’s winner. Contribution to the Charity This award was inaugurated last Fundraiser of the Year presented year and is named for Roger Green by Mr Colin McArthur who at that time had just stepped This award is a way of recognising down as Trustee after volunteering fundraisers across the country. for the charity for over 30 years. David MacMillan, who has RP The award is made each year to himself, won this year. He and his someone who has contributed to family have been fundraising for the charity for many years and this our work over a number of years. Professor John Marshall who has May, David and two colleagues rowed 166 miles from the source of been medical advisor, chair of our advisory board, trustee, speaker, the Thames to The Thames Barrier representative, mentor, advocate through over 6 days. To date they and friend for many years was this have raised over £25,000 for RPFB from this challenge! year’s winner. This year we were thrilled to able to honour some of our amazing volunteers at the Annual RP Fighting Blindness Conference with some special ‘RP Awards’.
6
The RP Helpline 0845 123 2354
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 7
FUNDRAISING
RP’er scales the Old Man of Hoy for Gene Team fundraising! Crime author and RP Fighting Blindness member Red Szell recently tackled the Old Man of Hoy - a 450ft-high pillar of rock in the Orkneys - to raise money for the 2013 Gene Team Appeal. Red, who has RP himself, only has around five per cent vision remaining. He describes it as looking through a pin prick in a piece of black paper. He didn’t let this hold him back however and scaled a rock face that would have many fully-sighted climbers worried!
When we spoke to Red about his amazing achievement, he said “As I approached the summit it dawned on me that without RP I would never have had the impetus to fulfil this lifelong ambition. Knowing that I could help make RP history by making a small bit of history myself spurred me into action and the The 43-year-old was aided by an good wishes, support and experience sighted climber who sponsorship of more than 200 followed at his feet to help guide people who have taken the trouble him up the rock, which he describes make donations to help RPFB as “a storm-lashed version of The achieve its ambition has made this Gherkin”. The writer, who in 2011 feel anything but a solo project published his first novel Blind Trust thank you one and all!" about a visually-impaired amateur sleuth in Hampstead, trains at We’re sure that you’ll join us in Climb London at the Swiss Cottage congratulating him on this fantastic Leisure Centre. He has raised many fundraising effort! We’re also sure thousands of pounds for RP that Red’s adventurous nature Fighting Blindness through this means you’ll be reading more about extraordinary feat and the money his exciting fundraising efforts in continues to roll in! future editions of Look Forward! email: info@rpfightingblindness.org.uk
7
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 8
RESEARCH
Retina Implant AG’s Alpha IMS Wins CE Mark microchip consisting of a 3x3 mm2 microchip with 1,500 electrodes, more electrodes than any other device being used in humans, implanted beneath the retina, Retina Implant specifically in the macular region. Earlier this year, results from the AG, a Company’s second human clinical developer of trial were published in Proceedings subretinal implants for of the Royal Society B, finding that patients with patients with the Alpha IMS chip retinitis were able to recognise faces and pigmentosa, has announced its read signs on doors. Similarly, wireless subretinal implant results from the company’s first technology, the Alpha IMS, has human clinical trial published in received the CE Mark. The CE mark Proceedings of the Royal Society B is a manufacturer's declaration in 2010 showed that placement of that the product meets the the implant beneath the fovea requirements of the applicable EC provided optimum visual results, directives and has passed certain allowing patients to recognize tests for safety. objects and facial expressions as Retina Implant’s technology, which well as read words and see dots on a pair of dice. has been in clinical trials since 2005, is designed to restore useful “This is an important milestone and vision in patients with RP. To date, we congratulate Retina Implant AG, 36 patients have received the Alpha stated David Head, CEO of RP IMS microchip. This is the first Fighting Blindness. “The latest European regulatory certification results from the multi-centre for the company and the Alpha IMS clinical trial have shown the impact device. that Retina Implant’s technology
Recently, we have been following the progress of retinal implant technology and reporting significant steps in its development.
The Alpha IMS is a subretinal 8
Office Telephone 01280 821334
has made in enhancing the quality
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 9
RESEARCH of life for people living with RP. It is important to note that currently these devices offer hope to RP patients who are now completely blind, they are not suitable for partially-sighted people.�
Second Sight's ArgusÂŽ II Retinal Prosthesis System became the first approved such device in the US. The company claim "lifechanging potential" for the treatment of blindness due to retinitis pigmentosa.
'Big leap' towards curing blindness in stem cell study An animal study in the journal Nature Biotechnology showed the part of the eye which actually detects light can be repaired using stem cells. The team at Moorfields Eye Hospital and University College London say human trials are now, for the first time, a realistic prospect. Experts described it as a "significant breakthrough" and "huge leap" forward. The Londonbased team have shown it is possible to replace the lightsensing cells themselves, raising the prospect of reversing blindness.
They have used a new technique for building retinas in the laboratory. It was used to collect thousands of stem cells, which were primed to transform into photoreceptors, and injected them into the eyes of blind mice. The study showed that these cells could hook up with the www.rpfightingblindness.org.uk
9
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 10
RESEARCH existing architecture of the eye and begin to function. However, the effectiveness is still low. Only about 1,000 cells out of a transplant of 200,000 actually hooked up with the rest of the eye.
stem cells in the eye could improve vision, but that number of stem cells would not regenerate a much larger organ such as a failing liver.
Prof Paul Bishop, chair of RPFB’s Medical Advisory Board said "This Lead researcher Prof Robin Ali told research represents a significant the BBC News website: "This is a step forward in the development of real proof of concept that embryonic stem cell-based photoreceptors can be treatments for degenerative transplanted from an embryonic conditions affecting the retina. The stem cells source and it give us a photoreceptor cells are primarily route map to now do this in affected in many of the retinal humans. "That's why we're so dystrophies and this research excited, five years is a now a shows that embryonic stem cells, realistic aim for starting a clinical which can be produced in large trial." quantities, can be used to replace The immune system is very weak in them. However, the research was undertaken using mice and there the eye so there is a low chance of the transplant being rejected. A few are further challenges to be cells can also make a big difference overcome before this technique can in the eye. Tens of thousands of be tested in human subjects".
4 New Projects Funded by RPFB At their meeting in July, Trustees
The RP Innovation Award, which is being funded separately as a result were able to approve funding for of a kind gift from a charitable four RP research projects including trust, was awarded to Professor Lako at Newcastle University the new RP Innovation Award, (pictured). The award is for making a total additional research £150,000 over two years and will allow Professor Lako to progress commitment of over £460,000. 10
The RP Helpline 0845 123 2354
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 11
RESEARCH
of Ophthalmology were granted £150,000 for their project “The development of human iPSCderived ex vivo models of retinal degeneration; their analysis in splicing-factor RP” and Professors Ali and Wright, also at the Institute, were funded £150,000 for their work on “Maintaining effective important stem cell work through her project “Exploiting the power of antioxidant capacity in a degenerating retina: a generic human induced pluripotent stem cells (iPSCs) to generate synthetic approach to treatment in RP”. fully laminated retinae in vitro for Finally, the board also agreed to disease modelling, drug discovery fund Dr Megaw at the University of and cell based therapies”. Edinburgh with a small grant of The charity’s Medical Advisory Board commented that the project would develop an “extremely powerful technique for studying RP and developing new treatments” and that Lako’s team “could make valuable contributions, especially given their particular expertise in relation to iPSCs.” In addition, Prof Webster and a collaborative group at the Institute
£13,000 to support an existing project “Rhodopsin trafficking defects in RP”. David Head, Chief Executive, said “We are proud to be funding such good quality projects this year. Our fundraisers should be proud too that we are in a position to make this level of commitment and we look forward to project results over the next three years.” www.rpfightingblindness.org.uk
11
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 12
CASE STUDY
My Journey with Visual Impairment by Bakul Shah I would like to share my personal story to provide an insight into my journey with visual impairment, and some of the lessons I learned which may be of help not only to those facing sight loss but also their friends and family.
I was born in Kenya 52 years ago. My eye condition was identified when I was at high school. The Ophthalmologist stated I had a rare eye condition that will lead to blindness and no one knew how long this would take. The news was devastating! As is the case with many disabilities, I went through a period of denial and a frantic search for cures. Well there were no real cures and fake cures seemed so enticing. I soon discovered that this was not going away and the only way to deal with it was to confront it. The sight loss meant that I could not do many things that teenagers did, e.g. drive a car, play cricket or squash. I was comfortable to share this information with close family and friends only, as I was afraid of being ridiculed if I told everyone. This dark winter period of my life 12
Office Telephone 01280 821334
changed when I met my wife, Samixa, 24 years ago. Her love, radiant personality and selflessness injected a dose of hope and strength which coupled with my determination enabled me to discover the limits of my abilities without fear. Her message has always been, “The past is gone, the future is yet to come and the present is the gift we have to enjoy now�. I had been so worried about the future that I had forgotten to enjoy the present moments! I qualified as an Accountant and over time I realised that I needed to look at a career that would be feasible with gradual loss of vision. I therefore went on to gain a further qualification in Taxation and I now work in this field. I am now severely sight impaired. I travel to work by train using my very limited vision which helps me to
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 13
CASE STUDY identify shapes of known landmarks and with the use of a white cane. I started to use my white cane in the office and while commuting about 10 years ago and with hindsight, I should have used it much earlier for my own safety and that of the others around me.
time of my life! I am fortunate that I get all this help and support out of love and not pity and of course I give back in return too and this creates healthy and fulfilling relationships. My message to visually impaired people is:
I had told my employer of my visual • Do use your white cane sooner, to disability, however using the white alert people of your disability and cane reinforced to everyone around to be safe. A half hidden cane in me that I needed certain help and your hand does not provide any adjustments in the workplace. My clues to the public, nor will it employer provided me with all the help you to identify obstacles. help that I need to make working • Inform people around you of your possible, for example computer needs both socially and at work. software that speaks out what is on There is no shame in having a the screen of a computer, and to disability; it is no different to learn touch typing to plan ahead for someone having a stroke or when my sight would become very diabetes for example. Openness limited and I would no longer be will help others understand you able to see the keyboard. Having better. informed my work colleagues of my condition, I have found them to be • Seek out help and receive any extremely helpful, e.g. at lunchtime, help from the public gratefully. going to unfamiliar places etc. I You will be inspired by the have also made a tag I wear on my number of new and interesting backpack which helps sighted people you will meet and interact people realise why I’m moving more with! Do not get disillusioned by slowly while commuting! (Turn to a minority of people who do not page 14 for more details!) understand disability. I have a great soul mate in my wife, a son who does me proud and family and friends who together have made this to be the summer
I hope these simple messages should remove the DIS from a disability and empower you to a more fulfilling life. www.rpfightingblindness.org.uk
13
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 14
FUNDRAISING
Arnold Lodge School fundraises for RPFB again! In July, RPFB’s Project Fundraiser Hannah Hickman was honoured to be invited to Arnold Lodge School in Leamington Spa to attend the end of year presentation day with RP Fighting Blindness trustee, Stephen Jones. The Parents' Association, led by RPFB member Bev Hollingsworth, has raised the amazing sum of nearly £14,000 for the charity through various fundraising activities such as parachute jumps, summer balls and the annual fete. It was a great day and Hannah and Stephen were delighted to be able to thank everyone personally, plus
share in Justin Hollingsworth’s success; as many of you will know he is now representing the UK in England’s adult VI cricket squad. We feel sure that you will want to join us in thanking Bev, Steve and Justin for their amazing support. The fantastic amount they have raised will go a long way and is greatly appreciated by us all.
RPFB member Bakul Shah has created a simple tag for his rucksack so that rushing commuters behind him can understand why he’s moving more slowly than they are. Bakul, who works in London, has found he is jostled less and has an easier journey thanks to it. Made very simply from a graphic off the internet printed on paper and laminated, with the words ‘Blind man, please give way’ included, this is something very cheap to produce that you, or a member of your family with RP may find useful.
14
The RP Helpline 0845 123 2354
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 15
FUNDRAISING
Shrewsbury Marathon and Fundraising Tim Robinson completed the Shrewsbury Marathon in June, running to fundraise for RP Fighting Blindness. He finished the very hilly route in 4 hours and 6 minutes, which consisted of four laps of Shrewsbury! Tim also told us the other competitors seemed to be mainly very serious runners, so he was very pleased to complete it in the time he did! To date he has raised nearly £500 with money still coming in. We want to thank him for his support and amazing efforts!
RP Fighting Blindness Annual Prize draw results This year the RP Fighting Blindness Annual Raffle made a fantastic £13,000 and was a real testament to how popular the draw has become. The 1st prize was a seven night stay at Old Water View Bed & Breakfast, Patterdale. The winning ticket was number 14571, held by Lawrence Johnson. The 2nd prize was £100 of highstreet vouchers. The winning ticket number was 34060, held by John Wills. The 3rd prize was £50 of highstreet vouchers and the winning ticket number was 3817, held by Mary Rafferty The 4th and 5th prizes were luggage and the winning numbers were 29160 and 20023, held by M. Pinsent and Alan Bundock respectively. Congratulations to all our winners! Roll on 2014 for the next Prize draw and more great prizes!
www.rpfightingblindness.org.uk
15
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 16
NEWS
Gene Team Appeal 2013 target reached A great achievement by RPFB members and supporters! cheques over the past few months, had dozens of phone calls and hundreds of online donations. Some of our members have gone that extra mile such as exchairman of RP Fighting Blindness Sir Alan Rudge who tackled the 50 nautical mile J.P. Morgan Asset Management Round the Island As most of you will know, RP Race course at the Isle of Wight in Fighting Blindness has committed June (see page 23 for more details!) to investing a total of ÂŁ750,000 into He raised thousands of pounds for RP gene therapy research at UCL the Gene Team Appeal and also Institute of Ophthalmology over the increased public awareness of our next few years. Of this amount, valuable work. Another member ÂŁ145,090 is committed to year two who did some outstanding of the project; to fund this portion fundraising for the project is Red the charity had planned to run the Szell who has RP himself. A long2013 Gene Team Appeal until 31 time RPFB member and renowned August 2013 - the appeal has author, Red scaled The Old Man of proved so successful however, we Hoy, a 450 ft (140m) tall sea-stack reached this total over a month in The Orkneys, raising the appeal early! many thousands of pounds (see page 7 for more details!). We want to extend our thanks to everyone who has generously We shall keep everyone up to date donated to The Gene Team Appeal with the progress of the Gene Team to date. The money you helped raise over the coming years. If you want will be supporting cutting edge to know more about The Gene Team medical research to help find a cure Appeal, please do visit our for Retinitis Pigmentosa. dedicated website at We have received hundreds of http://thegeneteam.wordpress.com/ 16
Office Telephone 01280 821334
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 17
Warsop Ladies Probus Club fundraises for RPFB The Warsop Ladies Probus Club has raised over £1000 for RP Fighting Blindness through a variety of fundraising events including a garden party and an autumn fair. The outgoing president of Warsop Ladies Probus Club Patricia Holden’s daughter Mary has RP, and this year the club adopted RP Fighting Blindness as their chosen charity. RP Fighting Blindness is very grateful for this fantastic support and we look forward to working with the Probus club in the future. Patricia said “The Probus club members have been extremely generous with their time and have worked hard to raise the money. The ladies from the club have done so much, worked very hard all year round and I’d like to thank them for all their efforts.” www.rpfightingblindness.org.uk
17
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 18
FUNDRAISING
Cyclists raise over £10,000 for RP Fighting Blindness A team of six experienced cyclists, including RPFB member Ian Lammie, travelled from Southport on the west coast of England, to Hornsea in aid of the charity. The fully self-funded team followed the Trans Pennine Trail, which is approximately 215 miles long and mainly off-road. Made up of riders aged between 60 to 69 years old from Doncaster and Huddersfield, the group passed by many towns and cities along their route including Liverpool, Runcorn, Warrington, Doncaster, Selby and Hull. Ian and the team have so far raised over £10,000! We want to extend our sincere thanks for this amazing fundraising effort!
Hull 10K Run Success If you’re running for us, or taking Gary Hobson, whose mother Andrea has RP, recently ran the Hull part in any fundraising activities on 10K run for RP Fighting Blindness. our behalf, you can request we send you RPFB branded t-shirts, polo Gary raised £112 and had a great shirts or running vests. We’re time, as well as raising awareness always happy to support your for the charity by wearing one of our RP Fighting Blindness t-shirts. efforts however we can! 18
The RP Helpline 0845 123 2354
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 19
NEWS
RP Helpline Volunteer Training Weekend In mid-August we held the annual RP Fighting Blindness Helpline volunteer training weekend. The course took place at the Holiday Inn in Leamington Spa and we were delighted so many of the Helpline team were able to attend. Denise Rawden, Helpline Coordinator and Thomas O’Neill, Communications Officer, from the office were on hand throughout the entire three day event, with David Head, Chief Executive, and Sue Drew, Outreach Officer, visiting to speak and catch up with the team. We enjoyed a number of great speakers over the weekend with topics ranging from cultural and ethical diversity, to researchers from Anglia Ruskin explaining their social research. Over twenty-five of our volunteers attended, with a number of new people joining the team. We hold the course to update Helpline volunteers about the latest developments at the charity, to introduce new members of the
team and to gain valuable feedback about the ways our patient information services can be improved. The in-depth training sessions are given to ensure that everyone on the Helpline is able to provide the most up to date advice and information. We invest heavily in the Helpline each year, with both volunteer training and service improvements, and are proud to offer a dedicated service for those with RP. If you think you may be suited to volunteering on the Helpline and would like to know more about the application process, please do contact the Helpline Coordinator on denise@rpfightingblindness.org.uk or call the office and ask to speak to Denise Rawden.
email: info@rpfightingblindness.org.uk
19
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 20
FEATURE
RP in BME Groups From published research, RP Fighting Blindness is aware that some ethnic groups are more affected by inherited retinal disease than others.
We believe it is important to provide good quality information to everyone who is affected, whatever their cultural, geographical or religious background, whilst recognising that there may be particular sensitivities or issues that must be considered. A focus group has also been developed to help us build our services and make them more accessible and relevant to people from all backgrounds. The group is made up of people from a range of backgrounds to ensure we gain opinion from different ethnic communities and cultural standpoints. In a report published in 2011 (Incidence and patterns of 20
The RP Helpline 0845 123 2354
detection and management of childhood-onset hereditary retinal disorders in the UK, Hamblion, Moore, Rahi, 2011) the rates of incidence in families of Pakistani origin were reported as approximately 10 times those in White British families, in Bangladeshi 7 times, and in Indian families 4 times. Higher rates were also identified as "significantly higher" in people of Black African (but not Black Caribbean) ethnicity. The charity is anxious to engage with and support people from different ethnic backgrounds - not because of political correctness or some box-ticking exercise, but rather because we are here for all
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 21
FEATURE
Monkey Car Insurance people with RP. RP Fighting Blindness members and supporters are not representative of the prevalence of RP in other communities within Britain, so it is clear that there are many people with RP from those groups who either do not know about the charity, or have chosen not to engage with us.
The car insurance price comparison website Monkey is making donations to a selection of charities when policies are taken out through their site, including to RP Fighting Blindness. Car insurance customers can choose which charity the donation goes to.
We are also aware that in some cultures it is less easy to discuss any disability; not just sight loss. There are cultural, family and religious factors which can make this difficult. Sometimes, therefore, people are left isolated and perhaps unaware of which sources of information can be trusted.
The site has already donated over £50,000 to dozens of charities including a starting donation of £300 to RP Fighting Blindness.
If you are affected by RP and from one of our Asian communities, please consider joining our new group on Facebook for support and socialisation. The group can be found at http://on.fb.me/172CUe6 If you would like to contribute or learn more please contact our Outreach Office Sue Drew on sue@rpfightingblindness.org.uk.
An additional £10 is donated for every policy that is completed. Potential insurance customers can obtain quotes from http://www.monkey.co.uk/rpfighting-blindness/. Please remember to tell your friends and family about this service if they are shopping around for car insurance!
email: info@rpfightingblindness.org.uk
21
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 22
FUNDRAISING
RPFB to offer beautiful Christmas cards once again East Sussex artist Tina Wray, who has RP, has once again produced a range of Christmas cards for RP Fighting Blindness to help us raise money. You may remember Tina's festive cards from last year... This year's are just as stunning!
The cards are A5 size and very high quality and the printing design costs have been waived, meaning RPFB make 100 per cent profit! Tina has made four designs for us this year, two of which are pictured. We’ll have the full range available to view on our website soon! Keep a look out! We’ll also remind everyone a little closer to Christmas via our e-Bulletin and across social media. Tina’s cards have proved very popular in past years and we only have a limited number available for sale! If you’re interested in purchasing a pack or perhaps more, please visit the RP Fighting Blindness website RP shop at www.rpfightingblindness.org.uk. We’d like to extend a huge thank you to Tina for contributing her time and considerable talent to fundraising for us. 22
Office Telephone 01280 821334
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 23
FEATURE
Sir Alan Rudge raises money for 2013 Gene Team Appeal In June of this year ex-chairman of RP Fighting Blindness, Sir Alan Rudge, sailed to raise money for RP Fighting Blindness’ Gene Team Appeal.
He lined up among 16,000 sailors to tackle the 50 nautical mile J.P. Morgan Asset Management Round the Island Race course at the Isle of Wight with his crew on his boat Sir Alan Rudge and his team with Molly Songline. Sir Alan has personal experience with RP as his daughter, Watt and her mother before the Round The Island Race in June. Penny, was diagnosed with the condition as a teenager. only be Penny and today’s sufferers The crew of Songline were joined on who can benefit from the board for the race by RPFB member tremendous work that is currently Molly Watt. 18 year old Molly has going into identifying the genes Usher Syndrome and is losing her that cause RP and finding a cure for sight and hearing to the condition. it. The scientific progress that is Sir Alan and the team came 27 out being made through The Gene Team of 680 and we’re delighted the race Appeal is extremely encouraging for them and for future generations.” was such a success. Sir Alan said: “Gene therapy has the proven potential to treat blindness. For this potential to be realised, however, the lab tests must be developed and made safe for clinical trials on people. It will not
We would like to thank Sir Alan and his team for sailing for the Gene Team Appeal, which raised us thousands of pounds for vital RP research. We also wish them luck for next year! www.rpfightingblindness.org.uk
23
94641 RP FB Autumn 148 Newsletter R03_Layout 1 11/09/2013 11:24 Page 24
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.
24
The RP Helpline 0845 123 2354