Look Forward issue 157 - December 2015

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Look Forward Issue 157 December 2015 Registered Charity No.1153851

Inside 40th Anniversary Appeal Page 4 Patient Information Days Page 5 RP Christmas Cards Page 6 Retina International 2016 Page 7

A very Merry Christmas from all at RP Fighting Blindness It’s that time again and Christmas is just around the corner! 2015 has been a year of great change for the organisation - we’ve welcomed a new Chief Executive and have been hard at work developing a new strategy for the years ahead.

2016 is set to be an exciting one with lots going on in aid of our 40th anniversary and we’re pleased to report the 40th Anniversary Appeal has got off to a great start! As this busy and productive year draws to a close, we’d like to thank everyone for their ongoing support and wish them a great new year!

Run for Us Page 15 Iceland Trek 2016 Page 18 RNC Case study Page 20 Smart Glasses article Page 22 Membership Renewal Page 23

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NEWS

Letter from the Chief Executive Tina Houlihan The past few months have been very busy here at RP Fighting Blindness - you’ll all be glad to hear I’ve firmly settled into my role as Chief Executive and have now been able to meet many of the charity’s supporters.

Many people have contacted me since my appointment, to wish me well in my new role, to make suggestions about changes we could implement across the organisation and to ask questions about our plans for its future. I welcome such questions, so please do feel free to email me at chiefexecutive@rpfightingblindness .org.uk

There is much activity at head office, as we plan and prepare for a whole host fundraising, awareness and patient events next year. The 40th Anniversary Appeal has got off to a flying start, two highly successful RP Patient Information Days have taken place and community fundraising events have been going on up and down the country.

On behalf of everyone at RP Fighting Blindness, I wish you all a very merry Christmas.

I’d like to thank you for the support you’ve shown RP Fighting Blindness over the course of the past year the organisation has seen a lot of positive change, with more to come.

RP Fighting Blindness funds medical research into retinitis pigmentosa and also offers a range of information and support services to patients and their families.

Do you follow us on Facebook and Twitter? Search for RP Fighting Blindness on Facebook to find our Page and various groups, and follow us on Twitter on @RPFightingBlind for the latest updates and news about the charity.

PO Box 350 Buckingham, MK18 1GZ E: info@rpfightingblindness.org.uk T: 01280 821334 (OFFICE) T: 0845 123 2354 (HELPLINE)

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FUNDRAISING RESEARCH

Christmas Prize Draw 2015 reminder!

It’s not long until the annual RP Fighting Blindness Christmas Prize Draw is made!

The draw will take place at head office on Tuesday 15th December 2015. All ticket counterfoils must be returned to us by 12th December 2015 and we’ll be announcing the winners shortly after.

We’ve already seen many draw tickets purchased, raising thousands of pounds for the charity’s work; thank you to all those who have already taken part, or sold them to friends and family.

If you’ve not bought your tickets yet you must hurry! You can purchase over the phone on 01280 821334 using your credit or debit card.

1st Prize

£200 of High Street vouchers, as chosen by the winner

2nd Prize

£100 of High Street vouchers, as chosen by the winner

3rd Prize

£50 of High Street vouchers, as chosen by the winner

Plus other great prizes!

Please make cheques payable to RP Fighting Blindness and post payment and counterfoils to: RP Fighting Blindness PO Box 350 Buckingham MK18 1GZ www.rpfightingblindness.org.uk

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FUNDRAISING

RP Fighting Blindness 40th Anniversary Appeal Update We’d like to say a big thank you to everyone who has donated to the RP Fighting Blindness 40th Anniversary Appeal so far - thanks to your support we have now raised £97,500 of the £150,000 target we’re aiming for so we can fund an extra RP research project in 2016, our 40th year.

Every day has brought an exciting deluge of cheques and credit card payments, with the total edging ever higher towards our target.

Supporters up and down the country have also pledged to run a whole host of fundraising events in our name next year to mark the 40th anniversary, for which we are very grateful.

longer. The work of researchers like Professor Cheetham is world class - we’re proud to be helping fund his work which is giving the scientific community a better understanding of retinal dystrophies as a whole.

Your contribution is invaluable without the collective support of people like you, we couldn’t do this.

As communicated in our recent letter, the money you donate is going to support the work of people like Professor Mike Cheetham, who is currently investigating whether misfolded rhodopsin proteins - one of the common causes of inherited retinal dystrophy - should be repaired or removed to help people with rhodopsin RP keep their vision

The RP Fighting Blindness 40th Anniversary Appeal will be running until the end of 2016, and we’ve already raised a fantastic amount.

This is a very exciting time for RP Fighting Blindness and the sight loss community as a whole - your ongoing support is greatly valued, and we look forward to updating you as the appeal progresses.

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EVENTS

RP Patient Information Days October saw the final RP Patient Information Day of 2015 take place at The Grand Hotel in Bristol city centre. The day was a great success, with over 80 delegates in attendance and some very interesting presentations made by a mixture of lay and expert speakers.

These regular Patient Information Days and our annual conference are now among the largest gatherings of RP patients and professionals in the UK. We encourage delegates to take the opportunity to talk to the RPFB team and each other, as well as the scientists and speakers. We ask some of the country’s top medical researchers to present, and the Ask the Panel session which we incorporate is a unique opportunity for the audience to pose questions about the condition, or the many strands of research that are currently being explored.

report that over the past four years we’ve run such events as far north as Glasgow and as far south as Southampton and attracted many attendees ranging from patients, scientists, social and health workers, educators and public sector workers.

Thanks must go to Second Sight for sponsoring the 2015 programme of RP Patient Information Days, and we thank the many speakers and scientists who took time out of their busy schedules to present to our delegates. We hope all the delegates who attended our Patient Information Days in 2015 found the The RP Patient Information Day events valuable and worthwhile. programme was devised to bring We’ve received a lot of positive RP information to different areas feedback and look forward to the of the UK and give our patient group RP Patient Information Day and other interested parties the programme returning in 2016. chance to hear first-hand from We’ll be announcing the dates experts about research even if and locations of next year’s they couldn’t attend our annual events in the new year. conference in London, our flagship patient event. We’re delighted to We hope to see you there! www.rpfightingblindness.org.uk

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FUNDRAISING

RPFB Christmas Cards It’s your last chance to purchase our RP Fighting Blindness charity Christmas cards! At just £4 for a pack of six with envelopes (plus postage), they’re great value.

You are able to purchase cards using your credit or debit card by calling the office on 01280 821334.

Skilled artist Tina Wray, who has RP herself and just five per cent vision remaining, has painted these two beautiful images and donated them to the charity. In addition, the printing of these high quality A5 cards has been donated free of charge, which means every penny of the sale value of the cards goes to support the work of RP Fighting Blindness.

Each card contains a simple ‘Season’s Greetings’ message.

These cards are always popular, so make sure you get your order in soon.

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NEWS

19th Retina International World Congress in Taipei, Taiwan 2016 sees the 19th annual Retina International World Congress take place, this time in Taipei, Taiwan from the 6th to the 10th of July.

Held once every two years this congress is a very well regarded and well-attended entry in the international ophthalmology community’s calendar. A very diverse event, it is attended by RP organisations, researchers, patients and scientists from across the globe.

communities in the Great China region where studies show one out of five patients in the world reside.

Conferences and presentations will be held with some of the world’s foremost experts giving feedback about their research.

RP Fighting Blindness will be Its location moves around the represented at the congress and world, as different RP organisations we know a number of our members take turns to host this important intend travelling to the event. We gathering. The theme of the look forward to meeting friends upcoming Retina International there, old and new.

World congress is Foresight - when East meets West. It is intended the For further information about the event please visit the Retina congress will help to promote International website event page better education about retinal degenerative diseases to on http://riwc2016.org You may be aware of the recent controversy in the media regarding charities and the buying and selling of donor information for marketing purposes; we wanted to let all our supporters know that RP Fighting Blindness never does this. Please rest assured we do not sell or pass on your data to any other charities or third parties.

www.rpfightingblindness.org.uk

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RESEARCH

Gene therapy staves off blindness from retinitis pigmentosa in canine model Gene therapy preserved vision in a study involving dogs with naturally occurring, late-stage retinitis pigmentosa, according to research funded by the US National Eye Institute, part of the National Institutes of Health. The findings contribute to the groundwork needed to move gene therapy forward into clinical trials for people with RP.

stage of the disease, thus widening the therapeutic window,� said Neeraj Agarwal PhD, a program director at NEI.

“The study shows that a corrective gene can stop the loss of photoreceptors in the retina, and provides good proof of concept for gene therapy at the intermediate

associated virus that is not known to cause any human diseases. The aim is for the virus to deliver the genes into retinal cells and for the genes to produce the RPGR protein.

About 70 percent of people with the X-linked form carry mutations that cause loss of function of the retinitis pigmentosa GTPase Regulator (RPGR) gene, which encodes a protein important for maintaining the health of photoreceptors. These are cells in the retina that absorb and convert Scientists from the University of Pennsylvania and the University of light into electrical signals, which are then sent to the brain. The Florida, also determined for the first time that gene therapy may be disease damages both types of of potential benefit even after there photoreceptors: rods (which allow has been significant loss of cells in us to see in dim and dark light) and cones (which allow for seeing fine the eye. Up to this point, animal detail and colour). studies had shown benefits from gene therapy only when it was used To overcome the effects of RPGR in the earliest stages of the mutations, the researchers packaged disease. healthy RPGR genes into an adeno-

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RESEARCH

The researchers then tested the gene therapy in a naturally occurring canine form of RPGR Xlinked retinitis pigmentosa that appears among some mixed breeds. Dogs with early to late stages of the disease were treated with the therapy in one eye; the untreated eye was evaluated as the control. Their results are published in Proceedings of the National Academy of Sciences.

Serial imaging suggested that the therapy halted the thinning of the retinal layer where photoreceptors are located and that commonly degenerates from the disease.

Using immunolabeling, a technique that helps tag features inside cells, the researchers showed that the structure of rod and cone photoreceptors was improved in the treated eye and better preserved when compared to the untreated eye. Electrical recordings from the retina also suggested that the therapy preserved cell function.

Overall, the findings suggest that gene therapy halted disease-

associated cell death for at least the length of the 2.5-year study.

Even in dogs with later-stage disease, gene therapy halted the loss of retinal thickness and preserved the structure of surviving photoreceptors. By contrast, untreated eyes continued to lose retinal thickness and photoreceptor function. Visual performance under dim light in an obstacle course, and in a maze that required detecting a dim light, was also significantly better in dogs using their treated eye compared with the untreated eye.

Before the therapy can be tested in people, additional research is needed to assess its safety and the risk for potential toxicity, said the study’s co-leaders, Gustavo Aguirre, VMD, PhD, and William Beltran, DVM, PhD, of the University of Pennsylvania. In the meantime, study collaborators, Artur Cideciyan, PhD, and Samuel Jacobson, MD, PhD, also at the University of Pennsylvania are carefully evaluating patients with RPGR mutations in preparation for a future clinical trial. www.rpfightingblindness.org.uk

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NEWS Anisha Shah’s mother Veena got in touch with us a while ago as she and her daughter wanted to include RP Fighting Blindness in their wedding preparations, in the form of wedding favours! We were delighted to assist! Veena has written a short piece about this innovative way to support our work.

A Favour from Hiraba to us!

When my daughter Anisha got married to Ashley, the 12 months prior to the wedding were spent frantically wedding planning… with a forever growing list of things to do. Weddings have changed a lot since I got married (36 years ago!) and one of the things I didn’t worry about back then was ‘wedding favours’.

Anisha and I sat down and decided to brainstorm ideas for favours. We both loved the idea of donating to charity on behalf of the guests and leaving a small notecard /charity badge for each of them. The choice of charity was simple - RP Fighting Blindness.

RP has always played a big part in my life. My mum, Hiraba, who sadly passed away in 2013, was registered blind and partially deaf at the age of 50. She was a wonderful mother with such a simple and positive outlook on life. My two daughters, Sheena and Anisha, and my husband, Praf, 10

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always saw (and still see) her as a true inspiration. She never considered her blindness and deafness as a disability and always reminded us of people much worse off than her. In her opinion, as long as you are in good health and have your family around you - what more can you want in life!

I called the charity the following week and spoke to Michelle Carter.

She was very grateful of our wedding favour donation and told us that once we sent her the sample wording for the notecard, she would take care of the rest.

The wedding day was beautiful and somehow our long list of things to do was magically completed. The guests loved the wedding favours and, most importantly, the cards raised awareness of the condition and charity.

Although we would have loved for my mum to be there on my daughter’s wedding day, her joyful and positive spirit was felt all around us!

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FUNDRAISING

RP Helpline and Information Services RP Fighting Blindness continues to provide support for people affected by retinitis pigmentosa at times of emotional stress and practical difficulty. The RP Telephone Helpline, Email Helpline and the Telephone Befriending services are delivered by a team of dedicated volunteers, all of whom have experience of dealing with the condition themselves or within their family.

The RP Telephone Helpline answers some 1,000 calls and the email service handles hundreds of messages each year; many from people who would not be able to access this type of support anywhere else. The volunteers, who undertake regular training, all either have RP themselves or are related to someone with RP. This ensures users are communicating with skilled and empathetic volunteers every time.

Our Telephone Helpline number is 0845 123 2354, and our Email Helpline address is helpline@rpfightingblindness.org.uk

Added to this, as many of you will be aware, the charity also provides an extensive informative website about RP, regular magazines and news bulletins, leaflets, factsheets, social media and informative events, all developed to ensure people with RP have access to good quality information. We regularly distribute cards with the RP Helpline number and other contact information to hospitals and eye clinics to ensure we reach to as many people as we can who may be affected by RP. If you would like any of our informative materials yourself, or to help others understand RP, please do contact Head Office on 01280 821334, and we’ll be happy to provide these free of charge. www.rpfightingblindness.org.uk

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NEWS

RP Fighting Blindness Stamp Appeal Update We’re delighted to be able to report the RP Fighting Stamp Appeal has gone from strength to strength in recent months; our total raised so far stands at £2,052.

With Christmas fast approaching, we would ask you to save the stamps from your festive post - it’s such an easy way to support our cause and makes a real difference!

You can post your stamps directly to the agent who handles the

sorting and selling using the address below, or you can give them to any member of the RPFB office team at our events, such as our annual conferences or Patient Information Days and we’ll pass them on.

Address for sending stamps: RP Fighting Blindness Stamp Appeal, PO Box 6107, Stromness, KW16 9AB Thank you!

Long serving RPFB staff member retires Kate Samwell, who has worked for the charity in a number of different roles over the past 22 years, is to retire at the end of December. Kate has acted as the charity’s Grants Administrator for the past two years, and prior to this was Office Manager and Secretary to the Board of Trustees.

Kate will be remembered by many of the charity’s longtime supporters; in her early days with BRPS as the organisation was then, she was part of a very small office team with Lynda Cantor, our founder. Kate leaving us is the end of an era, and the team at head office will miss her very much.

We would like to thank her for all her hard work over the years, and wish her every happiness for her well-deserved retirement.

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FUNDRAISING

Fundraise while skydiving Next year would you like to help fundraise for us, while having an amazing time for free? Skydiving is an exhilarating experience, and you can do this while supporting our cause!

What does the jump involve?

Technically the jump is called a ‘Tandem Skydive’. It is a Skydive because you will be freefalling through the air (without the parachute deployed) for several thousand feet; it is in tandem because you will be harnessed to a professional parachute instructor at all times throughout the descent.

This is the only way you can jump from such an altitude without spending thousands of pounds becoming a freefall parachutist.

What must I do to qualify for a free jump?

All you have to do is raise £395 (or more!) for RP Fighting Blindness by asking your friends and colleagues to sponsor you, using our specially designed sponsorship forms which you will find at the back of the information pack. Please do not be put off by this amount - if you ask everybody you know to sponsor you, 14

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you will find you can quite easily raise the minimum £395 sponsorship and remember, every penny you raise over the minimum will be further contributing to RP Fighting Blindness and giving you the chance to make an exhilarating freefall parachute jump for FREE! What do I do next?

Simply book your jump by visiting www.skylineparachuting.co.uk A Tandem parachute jump is suitable for sighted, visually impaired and blind people alike Want to know more?

Email michelle@rpfightingblindness .org.uk or call 01280 821334 if you want to discuss any aspects of this great fundraising activity.

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FUNDRAISING

Run For Us! Raise money for our work while having a great time by running for RP Fighting Blindness!

If you enjoy running and competing in running races, why not combine your passion with supporting RPFB? Join Team RP today! Sign up to Team RP and raise much needed funds for continued research into finding a treatment for RP. Many of our runners compete for us year after year across different events - testament to the fun and sense of achievement they feel when running for us. Whether you want to run solo, with a sighted guide, have RP yourself or are affected by a family member with the condition, there are a number of different events open to you.

Registrations are open for lots of different events in 2016 including the Silverstone Half Marathon, the BUPA London 10K and The Challenge Series. Further information about the different running events you can get involved in is on our website.

Please call Michelle at the office on 01280 821334 for further information or email michelle@ rpfightingblindness.org.uk www.rpfightingblindness.org.uk

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ARTICLE

AddVenture in Learning AddVenture in Learning is a fully self-supporting and volunteer-run organisation which exists to provide residential courses with an educational theme for visually impaired adults. As well as study and related visits, there are opportunities for socialising with other like-minded people.

ranges from hotels, university halls and outdoors activity centres.

A volunteer sighted guide assists each visually impaired person.

There are usually three or four courses each year held in different parts of the country; these vary widely but in the past have included ecology field trips, the study of authors and musicians, and the history of an era.

Accommodation for such courses

If you’re interested in finding out more, or perhaps would be interested in volunteering as a sighted guide for AddVenture in Learning, please visit their website at www.add-venture inlearning.org.uk for further information.

Wild Warrior X-Runner success!

Here’s a great shot of Kelly Dean and Sarah Toone who completed the Wild Warrior X-Runner event earlier this year, raising over £500 for RP Fighting Blindness. We’d like to say a big thank you to them for their dedication!

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FUNDRAISING

The Jungle Marathon RPFB supporters Mark Innocenti and Will Maunder-Taylor undertook the extreme challenge of The Jungle Marathon earlier this year, raising funds for a number of charities including us!

The Jungle Marathon is an intense footrace through primary Amazon Jungle in Brazil. It’s a six stage 254km race which some label as the World’s Toughest Endurance Race! The course, which includes swamps, river crossings, steep climbs and descents, village trails and fluvial beaches, combined with 100 per cent humidity and scorching temperatures makes it a daunting and exciting race, and competitors must require a strong mental mind-set to reach the finish line.

On top of this the pair had to be self-sufficient for all seven days, carrying food, water, kit and hammock on their backs, weighing around 12kgs!

Mark’s sister Carla has been diagnosed with RP which was their reason for supporting us, along with The pair have raised the impressive total of £5,153 so far and we’re very children’s charities Together for Short Lives and Children of Heroes. grateful for their support. www.rpfightingblindness.org.uk

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FUNDRAISING

Trek Iceland 2016 Do you want to take on an amazing personal challenge in 2016, taking in some amazing sights while raising funds for our work?

We’re excited to announce that we will be running a trek in Iceland in 2016, between the 23rd - 30th July.

Visual impairment is no barrier to this exciting adventure - it is suitable for both sighted and visually impaired alike.

Much of Iceland’s popularity is due to its natural features which include glaciers, bubbling hot springs, geysers, active volcanoes, snow-capped peaks, vast lava deserts, rivers, waterfalls and green valleys.

This is the premier trek in Iceland; we will be trekking in an area formed by volcanic activity which has created an interesting terrain of lava fields and black pumice sand. During the trek we encounter rivers and waterfalls cascading into deep canyons. We traverse some rivers on foot which will add to the challenge. There are few places on 18

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earth with such variety of landscape, colour and much more.

Each trekker needs to raise ÂŁ3250, with the total received by us by the 31st December 2016.

International flights to and from Iceland, internal transfers where mentioned, all accommodation, all meals during the itinerary (any additional food and drink at your own expense), drinking water whilst trekking, local support team

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FUNDRAISING

(guides, drivers), UK Expedition Leader, provision of first aid supplies, airport departure tax, and an Expedition Wise 90 litre expedition bag and over bag are all included in your fundraising total.

those taking part a huge sense of achievement and many friendships are formed.

Please visit the RP Fighting Blindness website for the trek itinerary and downloadable The RP Fighting Blindness treks are registration forms. If you have any questions, please contact hugely popular, and we hear again Michelle Carter at head office on and again from participants how 01280 821334, or email michelle@ much fun they’ve had taking part. rpfightingblindness.org.uk Completing such challenge gives www.rpfightingblindness.org.uk

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CASE STUDY

RNC Case Study With their A-Levels coming to an end, many 18 year olds wish to travel the world. For Hanif Khan, a visually impaired student at The Royal National College for the Blind, this once-frightening prospect is now a dream that can come true, thanks to his increased confidence and independence.

Hanif had usable vision during his primary school years in Stoke-onTrent. He lost his peripheral vision in Year 6 and was diagnosed with RP. At high school, he had a learning support assistant whilst he undertook long cane training. “I felt quite restricted and that I was always being watched,” he said.

Family, friends and staff members at RNC have all commented on Hanif’s increased confidence since he started his A-Levels at the Hereford-based College in September 2013. He did not feel confident enough to take part in a secondary school trip to France; however, as part of his Spanish course at RNC, Hanif visited Spain earlier this year and would love to go again.

“I tried some new things like eating 20

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squid and fishing for mussels. I can appreciate the country more now that I have been there, rather than just reading about it in books,” he said. “I think that you have to travel to learn other cultures and improve your own language skills.”

Hanif left the RNC to study Spanish with Arabic at university this year.

He aims to become a teacher but his ambitions do not end there: Hanif would like to visit the Arctic Circle and experience the delayed

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CASE STUDY

sunsets and Northern Lights for himself.

“I have definitely increased my independence. Before I came to RNC, I had never travelled alone on a train. I arrived at College as a nervous 16 year old; now I have got my A Levels and am going to university. And, just like anyone

else, now I can travel.”

As the new face of the College’s national I Can campaign, which aims to break down the stereotypes of living with a visual impairment, Hanif’s video of his time in Spain with his fellow A Level Spanish students is available to view at www.rnc.ac.uk/ican

www.rpfightingblindness.org.uk

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ARTICLE

Smart Glasses article

by RP Fighting Blindness member Sid Pritchard movements and from various distances plus an object placed on They are a piece of equipment being the table before me. Unfortunately, developed by Dr Stephen Hicks, a my level of vision has become too scientist at Oxford University in weak and all I could make out were collaboration with the John Radcliffe ‘blobs’ without any definition or Hospital. Dr Hicks is convinced patients edges. However, I can well imagine who have little or no useful vision that ten years ago I would have but who have good light perception benefited greatly from something should benefit from them. like this development.

They are now at the stage where The tester explained while they patients can be tested to assess initially thought patients with their suitability and the testing is RP such as me would be ideal being carried out by the RNIB. I candidates, they have tested people applied for testing and I would like with other retinal dystrophies such to share this experience with you. as Macular degeneration.

The glasses are still being The intention is to end up with a developed and consist of a unit like product which is very neat and the a one piece swimming goggle about processor will be as small as a pack half an inch thick with glass on of playing cards to fit easily into the both sides which completely covers pocket of a jacket or shirt. Dr Hicks the eyes in one go. A heavy cable feels that the finished product was connected to this and ran to a should be commercially available by processing unit on the table about the end of 2016 or early 2017 and twelve inches by eight inches with the cost should be less than £400. a number of controls such as The testing process will go on for brightness and contrast etc. some time and the team may well The way it works is an inbuilt come to your area again so, if anyone camera takes a picture of what I am is interested in trying them out, looking at and this is shown on the you should contact RNIB on inside of the goggles in front of my 0303 123 9999 and ask to speak to eyes. We tried lots of human someone about the smart glasses.

What are smart glasses?

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NEWS

RP Fighting Blindness Membership We’d like to say a big thank you to everyone who continues to support RP Fighting Blindness as a member or subscriber. The membership subscriptions are a vital addition to our annual revenues and help us across many different areas of our work.

or call the office and pay over the telephone using a credit or debit card. Any cheques should be made payable to RP Fighting Blindness for £24. Of course, if you pay by Direct Debit you do not need to take any action.

For historical reasons, many of our members and subscribers annual fees were due in January. If this applies to you and you have not yet paid, please can we ask you to send your payment with the form below

If you are not already a member but would like to be you can join by calling the office or visiting our website and searching for “membership”.

You can transfer to Direct Debit by calling the office on 01280 821334.

Thank you for your support.

RP Fighting Blindness Membership Form

Name: Address:

Contact Telephone No.: Please make cheques payable to RP Fighting Blindness and return to: RP Fighting Blindness PO Box 350 Buckingham MK18 1GZ www.rpfightingblindness.org.uk

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