Look Forward issue 145 - December 2012

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Look Forward Issue 145 December 2012 Registered Charity No. 271729

Inside Stem cell research from Southampton Page 4 Big Lottery Fund Page 6 Neurotech clinical study results Page 7 Carole Holmes: Helpline update Page 8 Run for Team RP! Page 9

The Gene Team Appeal: £35,000 raised to support gene therapy research Thanks to you, our very generous members and supporters, we have already reached the £35,000 target to fund Professor Robin Ali’s work for 2012, so the team now has resources to prepare for clinical trials next year. This means we’re one step closer to preparing these gene therapies for clinical trials on real patients like Toby, above (story continues on page 13).

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Ways of Seeing, by Annalisa D’Innella Page 10 The Gene Team Appeal Page 13 Stars of Our Community Page 14

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NEWS

Letter from the Chief Executive Many of you will have read about our appeal, intended to support Professor Welcome to your Robin Ali's gene therapy work at UCL December Look Institute of Ophthalmology. The “Gene Forward magazine. Team” is a fantastic way of focusing Regular readers will attention and hopefully financial support on this important line of work. have heard my As we go to press the appeal has mantra "change is the only constant", already generated £35,000, more about and as we head into this on page 13.

2013 this period is no different.

Research news this quarter includes Julie Child our Senior Fundraiser has updates on Neurotech's work, retinal left us on maternity leave and I know implants, the Big Lottery Project, a project call for next year and more. you will all join me in wishing her

David Head MBA

As ever, thank you for your support, well. We are joined temporarily by Hannah Hickman; Hannah has several and I wish you all the very best for Christmas. years' experience in the charity fundraising world including working for Tommy's and the Red Cross.

We are also now recruiting for someone to co-ordinate our helpline and befriending volunteers. This follows the stepping down of Carole Holmes, who has been doing this for us for many years on a voluntary basis.

Sophie Montgomery, one of our Trustees, has stepped down after 12 years' service and I would like to express my thanks to her on behalf of the charity. Sophie now becomes our first "RPFB Ambassador", a role which we will develop next year.

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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 P: 01280 821334

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RESEARCH

Second Sight Milestone for People with RP Second Sight, the American company that developed the Argus II retinal implant, claimed an “important milestone” last month when a patient with RP was implanted with the device to become the company’s 50th patient.

Surgeon Professor Stanislao Rizzo, who carried out the surgery in Italy, said he was “very proud” to have performed the milestone 50th implant.

The company’s Argus II system employs electronic chip to bypass defunct photoreceptor cells and stimulate remaining viable retinal cells to induce visual perception in blind individuals. Professor Rizzo added, “The results we have seen to date have gone way beyond any expectation that I had. Patients that previously had practically no residual vision, can now distinguish shapes, move around and eat more independently. This has an enormous emotional and functional impact on their quality of life.”

Second Sight gained European approval (CE Mark) for the Argus II system in 2011 and have since been striving to make the device available in several countries. This September, a U.S. Food and Drug Administration (FDA) Ophthalmic Devices Advisory Panel unanimously voted 19-0 to recommend FDA approval, which is now pending. An application has also been submitted to the UK’s NICE for the device to be funded by the NHS for a small number of patients.

Readers should note that RP Fighting Blindness does not have any links with Second Sight and they are one of a number of companies around the world working on the development of retinal chips. Other devices are in clinical trials and, although the technology is advancing all the time, at present the perception generated by retinal implants is generally very basic. www.rpfightingblindness.org.uk

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RESEARCH

New Source for Stem Cells May Help Save Sight Scientists have discovered specific cells in the eye that could lead to a new procedure to treat and cure blinding eye conditions, including retinitis pigmentosa.

Professor Andrew Lotery and his team at Southampton University have found that cells called corneal limbal stromal cells (taken from the cornea - the front transparent surface of the eye) have stem cell properties and could be cultured to create new retinal cells. They believe that this could lead to new treatments for eye conditions such as retinitis pigmentosa and macular degeneration.

with rejection or contamination because the cells taken from the eye could be returned to the same patient. Professor Lotery, who is also a Consultant Ophthalmologist at Southampton General Hospital, described the discovery as "‌ an important step for our research into the prevention and treatment of eye conditions and blindness ...".

However, he did add a caution that the work is at an early stage and that more research is needed to develop this approach before it is used in patients.

He went on to say, "We were able to characterise the corneal limbal stromal cells found on the front surface of the eye and identify the precise layer in the cornea that they came from. We were then successful in culturing them in a The paper, published in the British dish to take on some of the Journal for Ophthalmology, properties of retinal cells. We are suggests that using corneal limbus now investigating whether these cells would be beneficial in humans cells could be taken from the front as it would avoid complications of the eye and be used to replace 4

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RESEARCH New Applications and a Project Call diseased cells in the back of the eye in the retina. If successful this would open up new and efficient ways of treating people who have blinding eye conditions. This is a promising discovery as the corneal limbus is one of the most accessible regions of the human eye and it represents 90 per cent of the thickness of the front eye wall.

Therefore cells could be easily obtained from this area with little risk to the patient's eye and sight.”

Professor Andrew Lotery

The use of stem cells from sources other than human embryos also has the advantage of overcoming some of the perceived ethical issues surrounding stem cell therapy as a treatment for RP. RP Fighting Blindness is currently supporting Professor Lotery on another project which is due to end and report in the first half of 2013.

Heading into the new year RP Fighting Blindness Trustees will have to consider two new project grant applications at their meeting in January, for funding totalling some £400,000 over three years.

David Head, Chief Executive, said, “With a significant gift and legacy income last year, we head into 2013 with the ability to fund some exciting new work, so we will be encouraging research teams across the country to think about how they can progress RP work and what we can do to help”.

The charity is also launching a call for projects that may merit the RP Innovation Award, a £150,000 project grant over three years. This money is being made available to a project that takes an innovative approach to tackling RP, and that will bring together scientists from different disciplines – geneticists and microbiologists for example – to collaborate. Details of the call have been sent to institutions across the UK and published on our website. www.rpfightingblindness.org.uk

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RESEARCH

Lottery Funded Project Ends A 40 month long RP Fighting Blindness research project funded by the Big Lottery Fund came to an end last month. In a final report, the charity was able to highlight success in identifying potential pharmacological therapies for rhodopsin RP.

shown that one of these compounds can delay photoreceptor degeneration and lead to improvements in photoreceptor function.”

This is a significant point and a key outcome. The purpose of the grant The project was funded by a grant of £250,000 from the Lottery agreed was to progress research into a currently incurable condition and back in 2008. The intention was to test the effect of various candidate this last sentence demonstrates this well; if this work can be drugs in mice and rats affected by translated to humans, delaying RP, and establish whether it was photoreceptor degeneration would possible to slow down the rate of mean that a patient's sight could retinal degeneration. be preserved, or sight loss at least In a new application to further the delayed. work, Professor Michael Cheetham, David Head, Chief Executive, said, who led the investigation, reports: "The grant from the Lottery has “Through the previous support of been really important in facilitating RPFB (GR544) we developed an in vitro assay to test drugs to combat this project; it was our largest agreed contribution ever from the adverse consequences of this rhodopsin misfolding. Some of the another organisation at the time." most promising of these drugs were The project also included a then tested in animal models of "Stakeholder Liaison Group" - a rhodopsin RP with the support of group of patients that met regularly the Big Lottery Fund and RPFB with the research team during the (GR563). Importantly, we have project.

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RESEARCH

Neurotech Announce Results of Clinical Study In a further announcement from Neurotech, the US company have provided results from their clinical study of encapsulated cell technology (ECT) to deliver growth factors to the retina. The concept is to provide the retina, over a period of years, with chemicals needed to slow down degeneration of photoreceptor cells and thus prevent or delay sight loss in RP patients.

small sample of vitreous was also collected at the time of removal for analysis.

Neurotech claim that the NT-501 implants produced CNTF consistently over a 2-year period, with levels statistically equivalent The ECT being tested consists of a between the 6 and 24 month small device inserted into the eye implant period. The study has which is designed to release the demonstrated that the intraocular growth factors over 2 years. More ECT implant has a “favourable details of the technology including pharmacokinetic profile for the video explaining how it works and the treatment of chronic retinal surgery involved has been published degenerative diseases without at www.tinyurl.com/cell200. systemic exposure”.

The purpose of the recent study was to evaluate the pharmacokinetics of ciliary neurotrophic factor (CNTF) delivered over a period of up to 2 years by ECT implant in patients with retinitis pigmentosa and geographic atrophy. Patients received an implant, designated as “NT-501” in one eye which were then removed from various patients after 6, 12, 18 and 24 months. A

The technology was also presented at the recent Retina International Congress in Hamburg where Neurotech’s Professor Weng Tao reported on a number of Phase 1 and Phase 2 clinical trials for the growth factor CNTF. Some commentators believe this has the potential to become the first commercially available treatment for RP other than retinal chips.

www.rpfightingblindness.org.uk

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NEWS

Carole Holmes now temporarily in the very capable hands of Christine Medway.

Exceptional volunteers like Carole give their energy, skills, time and experience to the RP Helpline, ensuring it is an amazing resource for people with RP and their families.

The helpliners listen to callers and answer questions with knowledge As many of our readers may be and honesty, reassuring those who aware, since our last newsletter are struggling or feel they have Carole Holmes has stepped down nowhere else to turn. The helpline from running our RP Helpline. team have literally changed lives, Carole has looked after the helpline and we thank each and every one of for RP Fighting Blindness for them. Carole, we sincerely thank several years, and her help has you for all you have done for us. been invaluable; we could not have For information and support done what we have done over the call the RP Helpline on years without her. Carole will remain a helpliner and befriender, 0845 123 2354 or email: and the helpline’s management is helpline@rpfightingblindness.org.uk

Articles For The Blind: Apology We’d like to apologise on behalf of Royal Mail to anyone who had to pay a postal surcharge when they received the Autumn Look Forward. We have spoken to the CEO of Royal Mail, and been reassured that this will 8

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not happen again as they have implemented a new system to ensure all Articles For The Blind post from us is marked as compliant. Please do let us know if you have any problems with AFB post from RP Fighting Blindness.

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EVENTS

Run for RP Fighting Blindness!

We need people to join our running teams for amazing races, including the BUPA London 10k, Virgin London Marathon, New York Marathon and Silverstone Half Marathon.

Registrations are open for all of the above races.

Whether you’re up for a 26.2 mile marathon, a half marathon or a shorter (6.2 mile) 10k, please contact Michelle (01280 821334) for further information or email michelle@rpfightingblindness.org.uk

If you run for us, you will be making a difference by raising much needed funds for continued research into finding a cure for RP.

Marathon Girl!

our other runners were already in New York when the event was Eighteen-year-old called off, but many of the 10,000 runners took part in an “unofficial” Jill Hendry, who marathon around Central Park has RP, signed up to run the New York instead! Jill and her guide Elaine completed their race in just under Marathon for usbut unfortunately six hours, an amazing achievement considering their roller coaster trip! the event was Our trio of NY runners: Kieran Ivers, cancelled last Jill and Elaine, raised over £15,500 minute following the devastation caused by Hurricane Sandy. Jill and for us. Thank you all!

Easy Fundraising An easy way to raise funds for RP Fighting Blindness which doesn’t involve putting your trainers on, is to sign up to the Easy Fundraising website.

Registering means that when

you make a purchase online, they'll donate a percentage to us, at no extra cost to yourself.

Please see their website: www.easyfundraising.org.uk for more information. www.rpfightingblindness.org.uk

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FEATURES

Ways of seeing When Annalisa D'Innella started losing her sight as a teenager, she did all she could to hide her disability. It's only now that she's learning to take pride in being different…

Being different is bad. It's a lesson most of us learn in the playground.

Mercifully for society, it's a lesson most of us go on to unlearn. But for some miserable unfortunates it sticks around. And, for me, it did more than stick. It got swallowed. It became physically part of me – like a filter, a lens through which I see the world.

while living in Sydney that Mum began to notice I was having trouble seeing. I was always bumping into things – overhanging branches, toys left on the floor.

Initially she found it funny, but after our first appointment with the ophthalmologist, she stopped laughing.

I was diagnosed with retinitis When I was seven, my family moved pigmentosa. It is a genetic disease that affects the parts of the eye that to Tokyo. Mum enrolled me in a ballet class. We arrived at the deal with peripheral vision, night dance studio to discover that none vision and light adjustment. There is of the Japanese kids had ever seen no way of knowing how quickly the a blonde girl before. I still have condition degenerates into visions of that hall of mirrors, those blindness. Some lose their sight armies of identical giggling before they turn 20 and some retain ballerinas. a small window of vision throughout their life. I was referred to a When I was 12, my family moved to psychologist to help me digest the Sydney. On my first day at school, information and advised not to take the teacher asked me to stand in my driving test. I was also advised to front of the class and tell them learn how to use a white cane. where I was from. So I did. Then she repeated my every word in a mock In typical teenage fashion I told the English accent. If I had to pinpoint psychologist where to stick it and the exact moment I learned my reacted to the idea of a cane with lesson, I'd say that was it. It was such fury that my parents never 10

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FEATURES dared raise the subject again. I would, quite honestly, have rather died than take a cane to school.

Thankfully, I never had to. In fact, I didn't have to tell anybody unless I chose to do so. My strategy of denial worked wonders – though I was terrible at netball. And most of the time I forgot I had a problem at all. Until I bumped into something.

And then it would be a battle to hold back the tears.

I confided in my close friends and they took my arm as we strutted around Kings Cross on Saturday nights with our fake IDs. They led me into darkened pubs. They even helped me assess boys on dance floors using, as I recall, the terms: "hot", "semi-hot" and "feral bush-pig".

The enthusiasm with which these girls adapted to my strange disability was touching. And baffling. I never really understood why they didn't just leave me at home.

But this happy arrangement was short-lived. I moved back to England for university and reverted to outright denial. I walked slowly and appeared vague. Fellow students thought I was permanently stoned, which was fine by me.

When I moved to London and began a career in television documentaries, I did everything I could to appear normal.

Occasionally I'd miss a handshake and have no idea how to deal with it. It was the most stressful time of my life.

Today, aged 34, I have very little sight. While the average visual field spans 160 degrees, mine spans four www.rpfightingblindness.org.uk

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FEATURES degrees. I am registered blind with my local council. I know this sounds shocking. But it isn't. I function pretty normally. I move my eyes around and get as much of the picture as I need. I've never been happier. I have a wonderful husband, a gorgeous two-year-old daughter and I love my work as a writer. The fact I bump into things a lot is very low on my list of worries.

I still don't use a white cane. I'm not proud of this fact. I really ought to. I own one. It sometimes lives, folded up, in my handbag. I took it out for a spin the other day. I'd been inspired by comedian Adam Hills joking about the Paralympics on Channel 4.

I went back to Sydney recently. My friend Jane noticed my tinted glasses on an overcast day. "Are you wearing sunnies cause your future's so bright?" she quipped.

people love to be different."

This makes me think of my Dad. When I was young, he would hold my hand and skip down the street singing in his native Italian.

Mortified, I would beg him to stop.

"For a girl who is so intelligent," he would exclaim as I wriggled from his grasp, "you are emotionally stupid."

Then I think of my tiny daughter.

One rainy day, we were in a charity shop when she persuaded me to buy her a glittery snorkel mask.

Later, as we walked through the downpour, she held her umbrella and wore that mask with such beautiful beaming pride that several strangers stopped to smile.

Seema explains that, when we are young, the lessons we learn can become embedded in our subconscious. They become almost Later, as we dined in Bondi, we were physically part of us. Those feelings gossiping about a girl at school we are deep and hard to shake – hard, but not impossible. had both admired. "She had something special. She had what you had," said Jane. "What's that?" I was taken by surprise. "I dunno," said Jane, "She was from the outside. She was different."

"Being different isn't bad," she says gently as we end our session.

"Being different is a gift. It is something to be cherished."

Annalisa D'Innella is a writer for "Why do you think being different is film, TV and radio. Article bad?" asks Seema, a therapist who reproduced with kind permission of The Independent newspaper. is helping me use my cane. "Some 12

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RESEARCH

The Gene Team Appeal THE GENE TEAM APPEAL. HELPING TO FIND A CURE. You’ve donated in your hundreds to his second birthday, and his family our Gene Team Appeal, and we’d have worked tirelessly to contribute like to thank you all. to our research fund. One day, we hope Professor Ali and his team will find a cure to save Toby’s sight. One Decades of laboratory tests have day, we hope to find a cure for proven that gene therapy has the everyone with RP. potential to treat blindness. For this potential to be realised, Professor Robin however, lab tests must be Ali and his team developed and made safe. The will help us to £35,000 that you have donated so keep our website far will help the Gene Team prepare updated with news and research opportunities as they happen, and we’ll have some interesting video clips appearing online in the next couple of weeks.

their five-year programme of research for clinical trials on real people. People like 11-year-old Toby. Toby was diagnosed with RP at Great Ormond Street just after

The Gene Team will be recruiting for patients who meet specific criteria, and information will appear on our website in due course. 2013 will hopefully be a very busy year for the Gene Team, and you can keep up to date with the latest news (or make a donation) by visiting: www.thegeneteam.org.uk. www.rpfightingblindness.org.uk

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FUNDRAISING

Stars of Our Community This issue, we’d like to highlight some people who have done amazing things to support our charity…

With so many events, challenges and fundraising endeavours taking place all over the country for RP Fighting Blindness, it is difficult to feature everyone, but a special mention must go to Claire Booth who trekked to Everest Base Camp in October. The huge challenge of 5,364 metres up Everest were not enough of a feat for Claire; she joined a few others in an optional climb up Kala Patthar as well! 5,545 meters climbed and over £4,000 raised for our charity. An amazing achievement!

Sight to raise the £7,500 needed to fund an RP research grant. Team Carrots raised the full amount and had a fun evening too! Everyone got into the spirit of the event…

Congratulations to Samantha Franklin, Sandie Howting, Rebecca Ford, Sarah Thompson, Ann York, Mariella Reina and Abigail Sullivan who took part in the Thames Path Challenge in September, raising over £3,000 for us. Success on this challenge requires good preparation, the ability to dig deep, and to absorb the camaraderie to get you to that finish line! Have you got what it takes? Would you like to take part for RP Fighting Blindness?

To register, visit our website.

Without people who give their time and energy to raise funds, we In September we had 15 people take part in the Carrots NightWalk - wouldn’t be able to continue. Your See London in the Dark 2012, which support is invaluable to us and we was a joint initiative with Fight For thank you all.

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NEWS

The Power of Dance When Brazil’s ballet school for the The class of 20 "... experience blind performed at the closing dancing to live piano accompaniment ceremony of the Paralympic Games, for class, just like the Royal Ballet.” writer Kat Lister looked on in awe…

It may seem like a simplistic question, but what do dancers gain from the experience?

If you thought blind ballet was a Clare explains: “The group have new concept, think developed their performance skills, again. I will be the confidence, strength, balance, first to plead agility and flexibility.” ignorance, until I But what about the dancers spoke to RPFB and themselves? I spoke to Joanne who was forwarded to has RP, and attended her first class the Royal Opera House. only a few weeks ago.

Monday Moves is a weekly dance Joanne explains: “I have only a class for blind and partially sighted small bit of central vision in one adults taught by Royal Ballet eye. I had never been to the ROH Soloist, David Pickering. The aim before and was nervous and may seem revolutionary, but excited. The teacher was excellent, lessons have been going on at the and the hall was bright and ROH since 1988. spacious. I did not feel nervous Our understanding of ballet is so about bumping into people.” intrinsically connected with sight The freedom to move without that the concept of a blind ballet anxiety is something to be class is something I wanted to treasured, and classes like this understand. Dance is challenging grant participants the confidence enough when granted all of your in which to move freely. senses. How does one dance blind?

If you are interested in finding And what does it feel like to defy those visual limitations? I spoke to out more please email education@roh.org.uk Royal Ballet education manager or call 020 7212 9410.

Clare Thurman to find out more: www.rpfightingblindness.org.uk

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NEWS

Outreach Update Sue Drew, the charity's Outreach Officer, gives an update on what's been happening over the last quarter...

As Christmas approaches and 2012 draws to an end, our outreach work continues to be extremely busy, varied and far reaching.

be able to play a role in the development of improvements in this extremely important area of patient care.

It is impossible to include every aspect of our work in the limited space provided by a newsletter, so if you have any questions, or wish to raise specific issues, please feel free to contact me directly I will be happy to discuss anything with you.

In October, I attended Sight Village York, which was held in conjunction with Visionary’s Eye Clinic Liaison Officer’s conference. This event allows us not only to reach the professionals who work in hospital eye departments, but also to connect with the general public and raise awareness of RP.

In September, I was asked to speak at the ‘Breaking Bad News Workshop’ held at Moorfields Eye Hospital in London. This training workshop is for nurse counsellors, those working in the eye clinic, genetic counsellors and other staff involved in breaking bad news to patients.

My role during the training was to talk to staff about the impact of a diagnosis of RP, including the feelings and practical issues involved. This type of training is designed to improve care, understanding and support for patients and we are very happy to 16

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I was also invited to attend the Talking Newspaper Federation’s (TNF) annual conference in October.

For those of you who do not know, TNF is an umbrella organisation that represents the interests of local Talking Newspapers (TNs) in the UK. It was formed: • To provide information, guidance and help to local Talking Newspapers across the UK • To help TNs provide a comprehensive local news service to blind and partially sighted people

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NEWS

If you would like to find out more about talking newspapers in your area visit www.tnf.org.uk or telephone 01793 497555.

the county and a concern that support services for those with RP may be lacking. If you live in Kent and would be interested in joining a group in the future, please do contact me here at head office to discuss.

I attended the Kent Association for the Blind ‘Sight Matters 2012’ day in October, held in Tonbridge in conjunction with Guide Dogs. There is currently no RP group in Kent, but there does seem to be an increasing need for information in

As I write this article, I am sitting at my desk in the office in Buckingham, on a lovely sunny autumn day, so although it seems very early may I be among the first to wish you all a Merry Christmas and a prosperous 2013!

• To provide people with information and contact details

RAG Weekend 2013 The Retinal Awareness Group (RAG) is holding its annual Blackpool Weekend from Friday 12th April 2013 and we are delighted to invite you all!

experienced in helping visually and hearing impaired guests and presentations will be amplified with a loop system. There will also be quizzes and entertainment.

This year Professor Alison Hardcastle from UCL will talk about her work, and there will be information from Guide Dogs and many others. This a great opportunity to meet other people living with RP. We have exclusive use of the hotel which has accessible rooms; staff are

The cost of the weekend starts from £145 which includes dinner, bed and breakfast plus lunch on Sunday (and plenty of tea and coffee).

For more information please call Carole Holmes (01253 404194) or Beryl (01244 680463), or visit our website. www.rpfightingblindness.org.uk

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BRANCHES Scotland (East) Branch Jim McLean At our final 2012 meeting, which had a huge turnout, we had our former chair Ken Reid and his Olympic torch! What a thing of beauty and mystique! Ken had us enthralled with his tale of how the selection process went on and his continuing disbelief as he was selected as a runner. He told us he has never been so chuffed. I can only say it was a fit and proper choice as he does so many things for blind and partially sighted folk.

The torch itself was passed round all so we could handle it, fantastic to hold a part of the London Olympics, it almost (but not quite) made me wanna get my trainers out!

Branch fundraising right now is simply brilliant with people from Aberdeen to Annan and many places in between doing amazing things. The Hendry family from Carron continue to do wonders! (see page 9), and Mary Findlay from Dundee sent me pictures from the Fresh N Lo cycle run from Glasgow to Edinburgh her cousin Sally and Uncle Ben Cassidy completed in September: between them they raised over £5,000. Mary herself 18

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donated her birthday money, the princely sum of £350, and says she is so very proud of both of them.

Stevie Cunningham, of Everest base camp trek fame, tells me he and his mate Brian Paul are doing the West Highland Way in June 2013 and has a JustGiving page www.justgiving.com/StevenCunningham4 set up. Great stuff!

Watch out for the midges!

Essex & Suffolk Group Steve Carrington As we draw towards the end of another year we appear to be moving ever closer to the news we are all striving towards, a cure! Here at Essex & Suffolk we continue to raise funds towards that important research goal.

Back in the Summer Barleylands Farm & Essex County Show donated another £1,000 to RPFB. Thank you to Steve and Julie for their continual help there.

In September we had another of our famous ‘Stride for Sight’ sponsored walks in Southend, which raised

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BRANCHES

£1,618. The turnout was down this year, but fingers crossed next year we will be back to our usual level.

Well done Margaret and Ted Newson for yet another brilliant, well-organised event.

funeral but donations instead to RP Fighting Blindness. This was something even I was unaware of until after his recent death. Thank you Dad, God bless and hopefully this will inspire others to talk to their families and do the same.

Lastly thank you to all who donated over £400 to RPFB at my late We hope everyone has a wonderful father’s funeral. He requested in his Christmas and an excellent New will to have no flowers at his Year in 2013.

Somerset Branch Tom Graham Somerset member, artist and gallery curator Angela Blackwell was diagnosed with RP last year.

Her specific symptoms made the diagnosis quite complicated. As with many of us, not only do we need to come to terms with the situation, but friends and family often feel frustrated at their inability to help.

Two good friends of Angela, Mariella and Abigail, were determined to do something practical and volunteered for the Thames Path Challenge in September. They completed the 50km course from Putney to

Runnymede and raised a stunning £1,500 in sponsorship. Not regular walkers, they put in some hard training on previous weekends, which paid off on the day. To do 37 miles in under 10 hours was an astonishing achievement. This was a heroic effort and we owe them our admiration and gratitude. www.rpfightingblindness.org.uk

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FUNDRAISING

Isle of Wight Walk to Save Sight As well as all our usual fundraising events, next September we’re offering a new challenge: a 7-day walk around the Isle of Wight! Starting and finishing at Freshwater Bay House, this walk around the island features varied terrain, a beautiful range of beaches, cliff top walks, shallow creeks and clear rivers, taking in the downs’ beautiful wild flowers, enchanting villages and picture-postcard views. The fundraising target for this challenge is £1,600, and the event promises to be enjoyable and social whilst

raising much needed funds in the process! For more information or to sign up, contact Michelle on 01280 821334.

RPFB Membership The majority of RP Fighting If your membership is due on Blindness members have an annual 1st January, you can renew it renewal date of 1st January. by sending a cheque to the office, or online at If this applies to you it would be www.rpfightingblindess.org.uk really helpful to us, and would save (click on “renew my subscription”). the charity postage and If you are not sure if this applies to administration costs, if your you, please call the office or email membership renewal is paid as info@rpfightingblindness.org.uk. soon as possible. We will send If you pay by standing order then no reminders out late in January if action is needed. renewal remains outstanding.

Thank you for your ongoing support!

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The RP Helpline 0845 123 2354