Winter Newsletter 2010: Issue 137
IN NS SIID DE E...
● Great Promise for Electronic Implants ● Disability Living Allowance: Entitled to More? ● People Changes on Our Board and Staff ● Run the London Marathon, Cycle the Highlands & More! ● Jenny’s Pyrenees Mega-Walk ● Research Funding Applications Approach £1 Million ● Starting My Own Business With RP
1 Propose &iFamily! Join uKeep s fhelping! or a S pectaMembership cular Icto elFriends and H ke 2011
Contents Letter from the Chief Executive . . Ch... Ch... Ch... Changes . . Securing My Future With RP . . Research . . . Electronic Implant Advances Offer Hope Disability Living Allowance Changes Outreach Project Update 2010 St Dunstan’s . . . . . 900 km Walk for RP . . . . Stride for Sight . . . . Calendar Date: RAG Weekend . Dynamic Duo . . . . Branch News . . . . Goods & Services . . . . Crossword Puzzle No. 11 (Winter 2010) Membership Renewal . . . Fundraising . . . . . Call For Help . . . . . Tour De Grouse . . . . Calendar . . . . . . Iceland 2011 . . . . .
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About RP Fighting Blindness (Charity No. 271729) We are dedicated to funding research into treatment for retinitis pigmentosa (RP). We also provide support and information for people with RP. The RP Helpline is on 0845 123 2354 or at helpline@brps.org.uk. Our contact details: PO Box 350, Buckingham, MK18 1GZ, 01280 821334, info@brps.org.uk To propose contributions to the Spring 2011 newsletter, send them to us by 10 February 2011 at: info@brps.org.uk. Thank you! If you visit our website the password to the Members’ Area is ‘retina’ 2
Letter from the Chief Executive David Head MBA Dear Members keep members informed of progress, especially of the planned clinical trials in Oxford next year, described further on.
Welcome to your December magazine. With lots to squeeze in, I’m reminded how much we rely on the support of our volunteer editor Liz Cassidy and our volunteer readers for the audio version, so I’m starting off with a vote of thanks to them all that I am sure you will all echo.
This issue also covers the progress of our Outreach Project, now in its second year. It has proved invaluable and we are very keen on it continuing, dependent on funding of course. We have launched a special Christmas Appeal to allow us to fund this until the end of 2011, so do please consider supporting it - it should have dropped through your door earlier this month. We have to raise money for the Outreach Project separately of course because many donations to the charity are earmarked for our medical research work.
Last month the underlying reason for the charity’s existence was brought into focus by amazing news coverage of the progress made by companies developing retinal implants. The media headlines about “miracle cures” and “the bionic man” are unfortunate, but there is no doubt that this technology offers great hope for the future and the advances are very real. It also gave us a taste of how excited the media will be when we do finally find a treatment for RP. We are in truly exciting times.
It just remains for me to wish all our readers a Happy Christmas, and please raise a glass to further progress in 2011!
Though we don’t fund this commercially developed technology, we have strong links with Second Sight Inc and we are seeking to build links with Retina Implant AG. We will do our best to
David Head, Chief Executive 3
Ch... Ch... Ch... Changes This quarter has seen changes on both the Board of Trustees and the staff team. Trustee Lord Mark Birdwood retired in July as part of the usual board rotation. We thank him for many years of service to the charity. Mark’s retirement was marked by a reception in London attended by some of our fundraisers, volunteers and supporters at which he was thanked and presented with a small token of our gratitude. We are now pleased to welcome Stephen Jones to the board; Stephen is a long standing supporter and member of the charity, well known to many in the RP world, and brings a wealth of experience to the boardroom. At Head Office our new senior fundraiser Julie Child started working for us in October. Julie is very familiar with the charity sector having worked previously for the Lymphoma Association and also Hearing Dogs for the Deaf. Finally, though we were sad that our part time administrator Vivienne Eldridge had to leave us in October, we welcome Clair Pudaruth in her place.
Securing My Future With RP After years of working for others, Michael Cox, who has RP, has gone it alone to protect his future – with his own financial services company. Michael writes ...
I was diagnosed with RP in 2002 whilst completing the final teaching practice of my primary education degree. Having worn glasses for the past 14 years the optician had failed to spot the onset of the condition. A university lecturer observing my teaching noticed that I 4
seemed to be oblivious to the children on the periphery of the class. Over the next few months I was subjected to various tests to confirm the diagnosis. At Frenchey Hospital, I had numerous electrodes attached to my head and face, bright lights were flashed in my eyes for two hours, then I was left in a dark room for half an hour without being able to close my eyes. My neurological function worked correctly but I had RP. With RP, ophthalmologists always seem totally helpless and feel terrible about the fact that there really is nothing they can do to help. I immediately gave up driving, surrendered my licence and gave my car away to a friend. The initial emotion you go through is the unfairness your freedom has been diminished by no longer being able to drive. But then you appreciate that this is really nothing in the overall scheme of things, with the long term prognosis being perhaps total blindness. I decided teaching would be too much for me at this time and opted for a good stable job in a company with a disability policy. In hindsight, I do often regret the initial decision I made and that I did not at least try and make the teaching career work. There are definite merits in working for a big organisation, but for each plus there will always be a minus and progression can often be difficult to achieve. Now at the age of 36, I have taken the big step of self employment and hopefully also self fulfilment. Having spent twelve years working for various financial services companies, I have decided to set up a financial adviser business with a former colleague. I am positive about the need for financial advice following the past couple of turbulent years for my industry and confident that our company can acquire the necessary qualifications to become a chartered organisation.
For advice on starting your own business visit the Businesslink website at www.businesslink.gov.uk
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Members’ Area: Research Information Do you have access to the internet and are you interested in reading the charity’s Research Reports 2005 - 2010? Go to www.brps.org.uk and click on “Members’ Area”. Enter your password (retina), then select “Document Library” from the left of the page.
Research Proposals The deadline for applications for 2011 grant funding from researchers passed on 30th September and we are pleased to report that applications for grants totalling nearly £1m have been received. These have yet to be assessed by our Medical Advisory Board (MAB) and passed to the Trustees for consideration, but it shows there is a healthy interest in RP work at several centres across the country, including from a number of interesting researchers that we have not funded in the past. It also reinforces how important it is for both the staff team and our volunteers to keep up the fundraising work. If we decline a project, we want it to be a science-based decision, not one we are forced to make because of a shortage of funds. Can Eyes be Donated for Research? Unaffected as well as RP eyes are always valuable to research teams. Unfortunately our scheme for managing the collection of donated eyes has had to be withdrawn due to regulations surrounding the collection and use of human tissue, so people wishing to donate their eyes after death for research should now consult their own doctor or consultant. A donor should also let his/her relatives know of the wish for eyes to be donated. Please visit www.tinyurl.com/eyedonor for more information.
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Electronic Implant Advances Offer Hope to People With RP
German researchers under the leadership of Professor Eberhart Zrenner, working with a company called Retina Implant AG have reported advances in the development of a retinal implant designed to replace the function of failed photoreceptor cells. New advances in retinal implant technology are “enabling blind people to see”, according to releases from The Royal Society (3rd November 2010). Research published in Proceedings of the Royal Society B reveals that a group of researchers based in Germany have developed a retinal implant that has allowed three blind people to see shapes and objects within days of the implant being installed. The report states that one blind person was even able to identify and find objects placed on a table in front of him, as well as walking around a room independently and approaching people, reading a clock face and differentiating seven shades of grey. The device, which has been developed by the company Retinal Implant AG together with the Institute for Ophthalmic Research at the University of Tuebingen, represents a significant advance in electronic visual prostheses and could eventually revolutionise the lives of up 200,000 people worldwide who are blind as a result of RP. With RP, light receptors in the eye cease to function. Prof. Zrenner, a founding Director of Retinal Implant AG and Director and Chairman of the University of Tuebingen Eye Hospital, said, “The results of this pilot study provide strong evidence that the visual functions of patients blinded by a hereditary retinal dystrophy can, in principle, be restored to a degree sufficient for use in daily life.” The device - known as a subretinal implant - sits underneath the retina, directly replacing light receptors lost in retinal degeneration. As such, it 7
uses the eyes' natural image processing capabilities beyond the light detection stage to produce a visual perception in the patient that is stable and follows their eye movements. Other types of retinal implants - known as epiretinal implants - sit outside the retina and because they bypass the intact light-sensitive structures in the eyes they require the user to wear an external camera and processor unit. The subretinal implant described in this paper reportedly achieves greater clarity because it has a great deal more light receptors than other similar devices. Prof. Zrenner continues “The present study ... presents proof-of-concept that such devices can restore useful vision in blind human subjects, even though the ultimate goal of broad clinical application will take time to develop.” David Head, Chief Executive at RP Fighting Blindness, welcomed the report and said “This technology is very exciting. Prof Zrenner is highly respected and should be congratulated on this work. However we must also bear in mind that these devices are at an early stage of development - as this report notes - and it's important to recognise that from early trials to a product that is fully proven and generally available can take a long time. “We look forward to the results of further follow up work in Oxford and London and we will be monitoring developments with great interest.” RP Fighting Blindness is funding several other threads of research with the objective of preventing retinal degeneration as a result of RP. David added “I'm optimistic we will eventually find a treatment that prevents sight from deteriorating to this extent in the first place.” Oxford Eye Hospital has also released the following statement for people enquiring about taking part in clinical trials: The Nuffield Laboratory of Ophthalmology and the Oxford Eye Hospital (John Radcliffe) will be conducting a clinical trial to assess the electronic retina implant over 2011-2012. To be eligible for the trial in Oxford, participants need to be UK citizens who are now blind but have previously had at least 12 years of vision. 8
The implant is suitable only for people who have lost all their sight from retinitis pigmentosa. Anyone who still has enough vision to be able to see shapes or objects would not be eligible. Potential participants who are not from the UK should contact Retina Implant AG, which is the company that manufactures the device, to see if future trials are planned in their own country. UK citizens who feel they may be eligible to enter the trial should arrange for a referral from their GP to the Oxford Eye Hospital. Please note that this is a trial not a treatment and there are still several unknowns about the level of vision that might be restored. Also participants should be prepared to make several visits to the Oxford Eye Hospital during the first year. For further information please contact the research team at OEHResearch@gmail.com or the designated help line 01865 572900. The device will be implanted also at King’s College Hospital by consultant Mr Tim Jackson. King’s College Hospital are also asking that potential trial patients must be blind as a result of RP, but need to have had 12 years vision earlier in life. Vision may be light perception but of no use for navigation. Patients must again understand that a trial is not a treatment and the hospital will need to see patients regularly to get their feedback on the device and how better to improve it in future. Patients also need to be fit for a general anaesthetic. Professor Robert MacLaren November 2010 Original Sources: The Royal Society and Oxford Eye Hospital. Note that views expressed in an externally sourced article are not necessarily those of the charity or its Trustees and Medical Advisors. In particular the charity is not endorsing or funding these trials and cannot advise further on participation. __________________________________________________________
The section of the RP Fighting Blindness website on retinal implant technology will be updated over the course of the next few weeks as more information becomes available. Visit www.brps.org.uk.
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Disability Living Allowance (DLA) Changes
consultant or optometrist. Of course, if your CVI is older but shows that you have only light perception, then there is no need to do anything.
For DLA higher rate mobility component, some blind people may be entitled to an extra ÂŁ30 per week from 11 April 2011. Claimants must be under 65 and registered or certified as severely sight impaired (blind).
"If there is any element of doubt about the CVI, there will be a chance to produce a more recent one, or a new report (consultant or optometrist), which may show a degree of deterioration and thus that you fit the criteria.
The Department of Work and Pensions (DWP) will contact all recipients of the lower rate mobility component of DLA whose main disabling condition is sight loss, by April, to find out if they are entitled to an increase.
"There may also be an option to agree that your consultant can be contacted by the DWP."
Our Helpline Co-ordinator, Carole Holmes, representing people with degenerative eye conditions, recently took part in a telephone trial by the DWP to test this new process. After introductions, the caller asked two questions; have you got a copy of your BD8 or CVI (Certificate of Visual Impairment) at hand? and what are the levels of your acuity and field of vision?
Finally, the caller will request that a copy of the CVI to be forwarded to the DWP. Carole told the test caller that she was unable to write down the address. Happily, he offered to send a pre-addressed envelope. The RNIB has published a factsheet explaining the new rules and process which is online at www.tinyurl.com/rpdla. For support you can call our Helpline on 0845 123 2354 or email helpline@brps.org.uk.
Carole advises people with RP to have a CVI that has been issued since 2003 and there is a definite need to mention that RP is a degenerative condition. Carole says "If your CVI is more than seven years old, it is advisable to get an updated report from your
The RNIB Helpline is also available on 0303 123 9999 for further advice. 10
(I&S). It is therefore vital that we connect with new members and younger people, as we will need people to carry forward the objectives of the charity in both its I&S and research functions.
Outreach Project Update 2010 As it enters its second year, Sue Drew, Outreach Officer, reports on the Outreach Project so far.
During this year we have built strong foundations to enable us to take the project forward and to begin to realise our ambition of reaching people with RP at a very early stage in their ‘RP journey’. To date I have met with Consultant Ophthalmologists, Geneticists, Genetic Counsellors, and Eye Clinic Liaison Officers (ECLOs) in a number of hospitals, including Moorfields Eye Hospital. Moorfields have now granted official approval for our DVD, ‘Living with RP’, to be given to every patient with RP attending the retinal clinics. Other major hospitals are also beginning to provide their patients with this information. We also continue to have a presence at all Sight Village exhibitions and greater local attendance at many other regional exhibitions and events.
I want to bring you some good news on the difference we are making to the lives of people with RP. As many of you will know, the task of the Outreach Officer is to increase our contact and engagement with RP patients by developing and promoting our services, reaching people who are not currently benefiting from them, and encouraging them to join us. Recent reports in the press provide exciting evidence that progress in medical research continues to gain pace, and although we have to be realistic regarding timescales for delivery of practical treatments, we continue to remain extremely optimistic that they will happen. As we work towards treatments, we must continue to provide excellent information and support
Funding for the outreach project is now in place until June 2011. If 11
St Dunstan’s Support for Ex-Service VIPs
we can secure funding beyond that, we hope to be able to widen our scope to reach every area of the UK, ensuring that no one with RP feels isolated or forgotten. I am astounded by what we have accomplished, but we must not underestimate how much remains to be done. We could not have achieved this much without the support of a great many people, so I would like to take this opportunity to say a very big thank you to you all, it has been, and continues to be, a great team effort!
St Dunstan’s offers training, rehabilitation and life-long aftercare for ex-service people who have lost their sight. The aim is to help them overcome the difficulties they face. A leaflet is available which explains how you might qualify for support and the application process.
A fuller version of this article is on our website at www.brps.org.uk and if you any questions please contact me on 01280 821334 or email sue@brps.org.uk.
To find out more, please call St Dunstan’s on freephone 0800 389 7979 or if you are online visit www.st-dunstans.org.uk.
Run To The Beat London, September 2010 Thanks and congratulations are due to the runners of “Team RP” who took part in the Run to the Beat half marathon. All raised sponsorship of at least £500. Well done! Picture Credit: Kieran Ivers
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END OF A LONG, LONG WALK! Well done to Jenny Harrison as she finally completes her odyssey of 903.7km from the Atlantic to the Mediterranean! Jenny writes “You will be pleased to know that I have at long last completed the GR10 Trek along the high peaks of the Pyrenees. It has taken me 84 walking days spread over 4 years to complete the full 903.7km from the Atlantic to the Mediterranean, not including all the extra kilometres made through missed or absent waymarks (due to incompetence or snow), non visibility (due to low cloud or torrential rain) or through just simply getting lost and having to retrace my steps to civilisation. “However, despite a broken bone at 2509m in June 2008 my boots eventually made it to the Mediterranean on 1st September 2010. The photo shows the grand arrival.” Ed ... What an amazing achievement! Please support Jenny’s fantastic efforts for the RP Fighting Blindness research fund at www.justgiving.com/JennyHarrisonGR10Trek or directly by cheque to Finches, Lampool Corner, Maresfield, TN22 3DR.
Stride For Sight 2010 The Yorkshire Branch Stride for Sight walk is pictured overleaf on 25th September at the south end of Bridlington. Eleven people plus one guide dog strode along the South Promenade round by the harbour, and continued in blustery weather on to the end of the North Promenade. Then it was back to the park and ride. David Stevens from 13
the Branch said “It was a very windy day, with a bit of rain, but we all made it back to complete the 4-mile walk. Thanks to all those involved in the walk for their time and effort in this great event for the charity.” Also pictured is the Hampshire Branch stride on 25th September. Chairman Steve Harris said “It turned out to be a pleasant, bright and breezy day, and it was ideal for making the most of the sea air. As last year, we strode (or strolled) the 5 miles from Hill Head to Lee-on-the-Solent and back, after enjoying a very pleasant lunch at the local pub, raising sponsorship and collection money on the way.”
Thanks to all up and down the UK who took part in S4S 2010 - and their feet! S4S 2011 will take place on 24th and 25th September.
Pictured left are Cathy and Alec Findlay at their 50th wedding anniversary with their grandchildren. Congratulations! Cathy and Alex asked for donations to RP Fighting Blindness instead of gifts – they raised £520 for the research fund. A huge thanks to them and their friends and family. Please ask the office for special donation envelopes and other materials if you would like to make a donation from a family event. 14
calendar date calendar date calendar dat RAG Blackpool Weekend 1st-3rd April 2011 The Retinal Awareness Group (RAG) is holding its annual Blackpool Weekend from Friday 1st to Sunday 3rd April at the Carousel Hotel and members are invited again. The weekend conference regularly attract 100 attendees or more, and aims to provide information and advice about living today with inherited retinal dystrophies like RP, Usher Syndrome and many others. This year RAG are bringing the event under the umbrella of RP Fighting Blindness and Professor Robin Ali from the Institute of Ophthalmology will be our keynote speaker. Robin will update us on his exciting research into gene and stem cell therapy and answer questions about this and about progress more generally. We will also hear about the development of a group for young professionals with RP and about some of the events that have been so successful in increasing fundraising for the charity. Over the course of the weekend there will also be sessions on various leisure activities for VIPs such as art, reflexology and gardening. Experts will be present to answer questions about recent proposals for benefit changes as well as the maze of employment support and benefits generally. There will also be opportunities to split into groups to discuss concerns separately. Overall the weekend will cover a lot of useful subjects as well as being a great social occasion. We have exclusive use of the hotel with full modern facilities including a lift to all floors and wheelchair accessible rooms. You can book times in the restaurant to suit yourself, and waiters will be there to help.
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Presentations will be amplified and a loop system installed. A grass area and other facilities for guide dogs are close by. The conference will start from 12 noon on the Friday. The cost of the weekend per person is: double or twin room (£125); single room (£135); single in double or twin room (£145). This includes dinner on Friday night, breakfast and dinner on Saturday, breakfast and lunch on Sunday, entertainment and tea/coffee throughout the weekend. For more information phone Carole Holmes on 01253 404194 or Beryl Duggan on 01244 680463. To book, please contact the hotel, stating "RAG Weekend" (Carousel Hotel, New South Promenade, Blackpool, FY4 1RN; tel. 01253 402 642). We really hope you can join us on what is becoming an increasingly important event in the RP calendar.
Kilimanjaro Challenge
Father and son team Tim and Jacob Gibbins are setting off in February to conquer the highest peak on the African continent. Summitting at over 19,300 feet the mountain presents a tough challenge to anyone, so we wish them well. The dynamic duo have set themselves a target for sponsorship for RP Fighting Blindness of £5,000, please help if you can. They have set up an excellent webpage where you can learn more about the adventure and also make a donation at www.tinyurl.com/kilimanj 16
branch news branch news branch news b from our volunteers across the UK Essex & Suffolk Steve Carrington
Coventry and District Leigh Kelly
Wow, where has 2010 gone? It's been a busy year with some fantastic news coming through the pipeline.
It has been an exciting year within our branch this year. In recognition of Jean and Richard Bartlam founding our branch and being at the helm for thirty years, they were nominated for the volunteer hero category of the Pride of Coventry & Warwickshire Awards.
A big thanks to Margaret and Ted Newson for organising another fantastic "Stride for Sight Day" in September. We raised over £2,100 this year, an excellent result!! Thanks to those who took part this year and helped us make this a brilliant day. Another big thank you goes out to Julie Anderson, a new member of the Branch, whose daughter Gemma of GemStarz Dance Studio chose RPFB as the chosen charity at their Dance Show earlier in the summer. Over £130 was raised.
An awards ceremony was held at the Ricoh Arena in Coventry and we were all thrilled when Jean & Richards names were announced as the winners. They were presented with a trophy and certificate. Then on 22nd June Jean & Richard were invited to a garden party held at Buckingham Palace (see overleaf). You both looked stunning. An honour well deserved.
Please remember if you come up with a fundraising idea of your own, be it a coffee morning or another event please let us know as every little helps!
Fundraising has been a little slow this year, with no store collections. We were finding them increasingly difficult to get and even harder to get the volunteers. However, a brilliant garden party was held at Jean & Richard’s in June raising just under £400. We have kept the social events up, going for a meal in April and a
Thank you to all that make an effort year after year, what would we do without you! Lastly a very Merry Christmas & Happy New Year to everyone, hope to see you in 2011. 17
East of Scotland Jim McLean
canal boat trip in August. Not forgetting of course our regular quarterly meetings. Our next meeting is our Christmas party on Tuesday 7th December. If anyone would like to join us or would like more information please contact me on leighkelly@talktalk.net.
Thanks to David, Lynn Barr from the West of Scotland branch and I will be giving our views at a meeting with the council on the Highland region’s mooted idea of switching off every second street light in the area. Members know night blindness is a significant factor. We are really concerned about this and must challenge this wherever possible. Is it proposed in your area? According to one report, this has already been implemented in Essex at least.
A Happy Christmas to you from all at Coventry & District. **** The picture below shows Jean and Richard Bartlam. Jean writes “Richard and I had the honour of attending a Buckingham Palace garden party in June in recognition of running the Coventry & District Branch for 30 years. We enjoyed every minute.”
I’ve mentioned before how fortunate we are to have access to Prof. Alan Wright who comes along to meetings on a regular basis to update us. His comment in November, “They are getting serious now,” with regard to clinical trials is fantastic music to our ears, and keeps up our spirits and determination to do what we are doing across the UK. A great pub quiz is in the offing in Dundee. It will take place in the Fort Bar in Dundee on 3rd March 2011 (8-10pm, £4, prize donations gratefully received).
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Contact Mary Findlay at maryafindlay@aol.co.uk.
last collection as part of the Stride for Sight on 25th September.
The branch is doing well, meetings are well attended and members are doing many different types of fundraising and knowledge sharing is excellent.
I will now be arranging collections for 2011, hopefully with the same superstores. Anyone in the Hull area who can help, please give me a ring on 01482 856040.
We have new members who want to contribute whom I like to personally contact to welcome them to the fold. Only problem is, they all have to put up with me. “Ah weel, such is life!” jimuckmclean@hotmail.co.uk.
Hampshire Steve Harris Many thanks to everyone who came along to support us for our Stride for Sight (see earlier report), and to everyone who sponsored the event.
Corrigendum [editor]: Apologies for the error in the last issue. Jim McLean is of course East of Scotland chair (and does not cover the whole of Scotland). You will all be aware that Lynn Barr and Ann Stewart do a tremendous job in the West of Scotland branch.
We completed our street collection season with a very successful event at Romsey on 2nd October, when we collected £1,239. Well done to Emily, Derek and the team for all their efforts to raise such an excellent amount, which contributed to our total of nearly £4,500 from six events. We are very grateful to Richard, Elaine, Paul, and everyone else who has worked so hard to make these events possible.
Yorkshire David Stevens Hull Branch just completed its last collection for 2010 at Tesco Hull. Since the last newsletter we have held collections at Tesco Beverley and Morrisons Beverley in total raising £696.
We must also thank everyone who completed and returned our branch questionnaire, and we are finding the results to be of considerable interest. If you still have one lying around, then please do fill it in and let us have
Thanks to my wife and John & Lyn Hoe for their help. We did the 19
many of whom were not members but press ganged friends and family.
it back - we will still be delighted to hear from you. And finally, Seasons Greetings to all members and friends. If you would like to contact us, then please phone 023 80476894, or check out our website at www.brps.org.uk/hampshire
Trying something different, Jo Enticknap, the daughter of one of our long serving members, held a fundraising day at her office featuring a DVD and book sale as well as a “dress down day”. Through her efforts, Jo raised £200. Other donations and sums from collection boxes have kept a steady stream of income coming our way. So Dorset branch is confident of a record being broken for fundraising this year.
South Wales Marian Evans Once again Christmas is upon us. We hope to see even more of you at our Christmas lunch at The King Hotel on 12th December, Pontardulais. Please ring me on 01554 821531 to reserve. Our thanks to all who have donated or raised branch funds for research.
Dorset Branch Toby Hart
On a sad note, Betty Carson a longstanding and valued member and supporter, passed away in October. Many of us assumed she was in her seventies but she was in fact 85 this year. She was known for her forthright comments and never missed a chance to ask a visiting speaker pertinent questions. Betty was also one of the first to express gratitude to those who organised social and fundraising events. Her contribution to our branch will be sadly missed.
As the leaves fall from the trees Dorset branch has been wrapping up its season of street collections with successful collecting days in both Dorchester and Poole. Many thanks to our collectors
Our AGM is scheduled for 12 March 2011 in Bournemouth and Professor John Marshall has kindly agreed to come along to update the meeting on the latest research progress. Dorset
Special thanks go to the family and friends of the late Geoff Maddock who, in tribute to him, collected £1,140.
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branch will be more than happy for members of any other branches to come to the meeting.
has helped with social events and raised funds - either by running a marathon, cutting stamps off envelopes or putting their loose change in a collection can or jam jar (to name but a few ways you have raised funds for RP research). We look forward to seeing you at the Devon Hotel on December 11th where Sue Drew will be joining us for Christmas lunch.
Please telephone Hazel Hart on 01202 744344 if you would like more details and are interested in coming along. Devon & Cornwall Julie Allen It is that time of year again when on behalf of the Branch Committee I thank everyone who
Finally, can I wish you all a Merry Christmas and a Happy New Year. joolsallen@hotmail.com
oods services goods services goods ser Looking for a useful Christmas present for a visually impaired relative or friend? VIP Diaries is a social enterprise that produces large print products for visually impaired people. All profits support VIPs of all ages.
Great gifts include a ready to hang A3 Calendar with UK public holidays and notes boxes against each date. Or how about one of their writing pads, with semi or heavy bold lines on white paper? These diaries come in week to view format with bright yellow covers: • an A6 pocket diary that fits neatly into a pocket or handbag • an A5 midi diary with more space to write in • a full sized A4 desk diary big enough for your year’s appointments 21
And in A4 and A5 size is a specially designed A-Z with plenty of space to store addresses and details, you can choose: • address books, with light blue covers, and 3 names to a page • telephone books, with light green covers, and 5 names to a page All the products are available to individuals and organisations and are sold throughout the UK and abroad. Contact VIP Diaries on 01539 726613, visit the website: www.vipdiaries.co.uk or email info@vipdiaries.co.uk.
Christmas Stickers and Cards Though of course it will be last-minute when this magazine is distributed, do remember that this year you can again order stickers for your own cards to support our work. These are suitable for any card, not just at Christmas, and you can order batches of 100 stickers for £10 or 50 for £5. Send your order and cheque payable to RP Fighting Blindness to the office, the address is on the inside front cover of this magazine. Also, a reminder that a very wide range of greeting cards of all types is available from www.charitycards.co.uk. We receive a small percentage of the value of your order if you nominate RP Fighting Blindness.
A very Merry Christmas and Best Wishes for 2011 to all of our members, from staff, trustees and volunteers at RP Fighting Blindness
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Crossword Competition No. 11 (Winter 2010) Win this season’s wintery mystery prize. Entries to: RP Fighting Blindness Crossword Competition PO Box 350, MK18 1GZ (Closing date: 1st Feb 2011) Name: ................................. Tel: ..................................... Postcode: ........................... Last puzzle’s winner was: Mr John Gibbs from Doncaster who wins an audio book, “The Visitor” by Lee Child. Answers are available from the office. ................................................................................................................ Across 6. Undressed leather with a soft nap finish (5) 7. Member of a small body of people with supreme state power (8) 10. Northumbria town voted best place to live in Britain in 2002 (7) 11. A heraldric armorial emblem in the form of St Andrew's cross (7) 12. SI unit of electric charge, symbol C (7) 13. Roman general who defeated Mark Antony's forces at Actium (7) 14. Oscar winner (Best Actor) 1939 for Goodbye Mr Chips (6,5) 19. Toothless, burrowing mammal, also called the spiny anteater (7) 21. Italian curd cheese often used in ravioli, lasagne, etc (7) 23. Hot spice from Hungarian red pepper, a species of Capsicum (7) 25. Former Turkish title for civil officials, now used for Mr (7) 26. Pollachius virens of the cod family, also called saithe (8) 27. To accustom, to habituate, to harden (5) Your ‘down’ clues are overleaf ... 23
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2011 Membership Renewals Members of RP Fighting Blindness that joined the charity prior to 2009 did so with a fixed renewal date of 1st January each year. If this applies to you your 2011 subscription of £20.00 is due very shortly. It is very helpful to us if you send this in as soon as possible as it helps with our cash flow, end of year accounting, and reduces the cost of posting reminders. Please send your cheque with the form below to Membership Renewals, RP Fighting Blindness, PO Box 350, MK18 1GZ. Thank you
Name .............................................. Postcode ........................................... My 2011 Membership Subscription is enclosed
£20
Please consider making a donation to support our work
£.......
Total enclosed
£.......
................................................................................................................ Down clues for Crossword 11 Overleaf 1. English designer of Diana Rigg's wardrobe for The Avengers (4,4) 2. Country of the liqueur Kahlúa, made from coffee and vanilla (6) 3. Australian kingfisher with a discordant laughing call (10) 4. A light touch, especially by a moving snooker ball on another (4) 5. To be sparing or niggardly, often by necessity (6) 6. Sample, especially of cloth, or of carpet, wallpaper, etc (6) 8. Flap on an aeroplane wing tip for lateral balancing (7) 9. Rhythmic women’s exercise using balls and hoops for example (5) 13. Belgium's most successful football club (10) 15. Comedian who, with (Frank) Skinner, wrote Three Lions (7) 16. Strong, light corrosion-resistant metal, atomic number 22 (8) 17. Youngest of the Marx brothers film comedians (5) 18. Small overnight travelling bag (6) 20. In Greek mythology, the god of sleep (6) 22. Horny part of a horse's hoof (6) 24. In botany, the angle between leaf and stem or branch and trunk (4) 24
Two Pounds for RP Long-term supporter and member, Jonathan Abro, has developed a unique way of fund and awareness raising for the charity. As Jonathan explains “I am always looking for new ways to raise funds and increase awareness of RP. I felt that the drawing in of the early dark evenings provided a really good way of explaining to work colleagues, friends and family exactly what it is that I experience, which isn’t something that most people fully understand. My partner Annie and I developed an email which explained about my RP, and the effect of the earlier darkness on it, and asked the recipient to donate two pounds for RP research via a fundraising page on the internet. The aim was to ask people to donate but not make anyone feel obliged to donate more than they can afford, or wanted to for that matter! We distributed the email initially to all those we knew, and it was great to hear so many passed it on still further. The support, generosity and encouragement that I have received from colleagues, friends, family members and complete strangers has been incredible, overwhelming and humbling. I have managed to double and redouble my target and it has still been broken! “It delights me to know that there are so many people willing to support our quest for a treatment and cure. I highly recommend telling people how RP affects each of us and asking them for support; it will bring us much closer to reaching our goals.” Jonathan’s fundraising total currently stands at a truly amazing £4225. If you wish to donate to Jonathan’s campaign log on to www.justgiving.com/justtwopoundsforrp Michelle & Helen Our Events Coordinator Michelle is away until January. In the meantime we are grateful to volunteer Helen Leivers who has stepped in to help. Helen is at the office on Tuesdays, Wednesdays and Thursdays. 25
We need your help! Julie Child, Senior Fundraiser As many of you will no doubt be aware, charity fundraising is becoming an increasing challenge given the current economic climate. One of our focuses for the next year or so is to concentrate on, among other things, fundraising from companies, businesses and community groups. So, we are asking for your help. Does a company that you or a family member work for choose a charity of the year? Or does your company make regular donations or gifts-in-kind to charities? Does your organisation run an employee fundraising programme with a gift-matching scheme? Or are you a member of a community group, for example Lions, Rotary, WI or Inner Wheel? If you can answer yes to any of the questions above, or you would like to discuss any other fundraising suggestions you have, I would love to hear from you. Please call me on 01280 821334 or email julie@brps.org.uk
Run for Team RP Helen Leivers, Volunteer We have a limited number of places left on our RP Running Teams for next year’s Virgin London Marathon and Adidas Half Marathon. The Virgin London Marathon will take place on Sunday 17 April 2011. In return for raising the minimum sponsorship of £2,250, runners will receive a runners pack, support from our events team and a welcome reception, shower and massage at the end of the race. The Adidas Half Marathon takes place on Sunday 4th February 2011 at the historic Silverstone racing circuit in Northamptonshire. Members of the RP running team will need to raise minimum sponsorship of £200. If you are interested in taking part in either of these events, please contact me on 01280 821334 or helen@brps.org.uk. Don’t delay, places are filling fast! Other running events will take place around the country throughout the year. If you are interested in joining ‘Team RP’ at any other running event, do contact us. 26
The ‘Tour De Grouse’ 2011 Calling All Cyclists For a while now we have been thinking about how we might organise a cycling event, and then last month we had some great news from Mary Findlay, a long standing supporter from Dundee. The organisers of a high profile annual charity cycle tour across a scenic area of Scotland, sponsored by The Famous Grouse Whisky, have agreed that the sole beneficiary of the 2011 ‘Tour de Grouse’ event should be RP Fighting Blindness. This is fantastic, especially as usually several charities split the proceeds of the tour, and reflects Mary’s hard work promoting us and the charity. The event will take place on the weekend of the 4th/5th June 2011 (tbc) in the Cairngorms. A hostel has been booked near Aviemore for the hard core cyclists, the main group who cycle the whole 120 mile route. Other individuals and groups can join in for shorter stretches of the route, and we will be publishing more details about this in our March issue and on our website later. Our Chief Executive David Head will be cycling the route and we invite members who would also like to take part to mark the weekend in their diary and email david@brps.org.uk in the first instance. This is a great opportunity for cycling fans to get involved in a fantastic event and help us raise funds for RP research. 27
Events Calendar Please support our 2011 fundraising and information events: March 6 Adidas Half-Marathon Silverstone April 1-3 RAG Weekend Blackpool (See p15) April 17 Virgin London Marathon (hurry!) June 15 Members’ RP Conference, Euston June 4-5 ‘Tour De Grouse’ Cycling, Scotland July 16-23 Trek Iceland (See back page) July 17 Symphony Concert Birmingham September 10 Parachute Jump Day Northamptonshire September 24-25 Stride 4 Sight Nationwide sponsored walks December ‘Simply Christmas’ Annual concert Milton Keynes
TREK for SIGHT th
rd
16 -23 JULY 2011
ADVENTURE ICELAND
Hike the experience of a lifetime for RP research If you have ever wanted to take part in an exhilarating trip for charity, now is your chance to do so for a cause close to all of our hearts. RP Fighting Blindness needs you! We are taking a group to dramatic Iceland, land of the midnight sun, glaciers and geysers, stunning landscapes and challenging hiking terrain. Enjoy an experience away from the tourists and immersed in this very special place. We provide everything you need. You’ll need to be fit and you’ll have to commit to raising £3,250 as part of the challenge, but we will be with you every step of the way. We’ll support you in fundraising, training, and on the trip itself. You’ll share the experience with people that will become lifelong friends, on an adventure you will never forget.
To learn more about this unique expedition: W: www.trektofightblindness.org.uk E: fundraising@brps.org.uk T: Helen on 01280 821334 Charity No. 271729 28