Look Forward issue 149 - December 2013

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Look Forward Issue 149 December 2013 Registered Charity No.1153851

Inside CIO Update Page 3 Hampshire Visually Impaired Football Club Page 4 Foreign Currency Appeal Page 8 RPFB Christmas Cards Page 9

2013 Ends on High Note for RPFB This year proved a busy one for the charity with exciting organisational changes still underway.

As a busy year draws to a close for the organisation, we would like to thank our many members, friends, and the general public for supporting our work over the past 12 months. We have funded several ground-breaking RP research projects, as well as strengthened core patient support services and look forward to doing even more to help those with RP in 2014!

Genetic Testing: Attitudes and Understanding Page 13 Joe Churcher’s Mount Kilimanjaro Challenge Page 14 Articles for the Blind Scheme Page 20 RAG 2014 Page 21 2014 Events Calendar Page 24

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NEWS

Letter from the Chief Executive David Head MBA I can scarcely believe Christmas is almost upon us again, but am delighted to tell you the charity is closing 2013 even stronger and more productive than ever before.

This year has certainly been one of change for the organisation – we have employed several new members of staff, including the creation of a new post, seen a fantastic amount of commitment from our community fundraisers and are currently in the process of changing to a Charitable Incorporated Organisation (CIO).

Please see page three for further updates about this.

Every area of our work, from our support services, to RP research, to community and corporate fundraising is being developed and improved to ensure that we are working as efficiently and effectively as possible. I look forward to 2014 being a year in which we reap the benefits of our new CIO status, as well build upon 2

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the many successes we have enjoyed this year.

As ever, should you have any news or think of anything you think we should cover in the next edition of Look Forward, please email our Communications Officer Thomas O’Neill on tom@rpfightingblindness.org.uk with your suggestions.

I wish you all a very merry Christmas and a happy new year.

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

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

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NEWS

Charitable Incorporated Organisation update As most of you will be aware on 22 June, at the RP Fighting Blindness Annual Conference, our members overwhelmingly voted in favour of the charity pressing ahead with significant constitutional change, enabling the trustees to go ahead with transferring the assets and operations of the charity to a brand new Charitable Incorporated Organisation (CIO).

RP Fighting Blindness is on track to complete the administrative processes involved with a view to completing the technical transfer early in 2014. We have been working hard at the office to process the membership and subscriber forms which were sent to existing members, friends and subscribers

in October, and have been changing our literature, posters and information to reflect the new charity number.

If you are a member, friend or subscriber but haven’t as yet returned your membership form, please do so as soon as possible to allow us to update your details and confirm your continued relationship with organisation.

Should you have any questions about the organisational changes, or the form we sent you, please do contact head office on 01280 821334.

If you pay your annual membership by cheque in January each year, don’t forget to mark it on your new calendar!

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. email: info@rpfightingblindness.org.uk

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FEATURE

Hampshire Visually Impaired Football Club Julie Fowler, the Secretary at Hampshire Visually Impaired Football Club, recently got in contact with us as the team is seeking new members and wants to raise awareness of VI football as a sport generally.

Hampshire Visually Impaired Football Club was formed in June 2013 by a dedicated team of volunteers. They train once per month at River Park Leisure Centre, Gordon Road in Winchester, from 2pm - 4pm. They have recently secured funding from Sporting England and their aim is to enable visually impaired males and females over the age of 16 to play football. They have Football Association qualified coaches and have entered into the national partially sighted football league.

has resulted in losing his peripheral vision but he still has some useful central vision.

Aaron Fowler is the 22 year old captain of Hampshire Visually Impaired Football Club. He has have RP and was diagnosed with the condition at the age of five. This

Aaron believes playing blind and VI sports such as football and cricket has helped him grow in confidence and also given him the opportunity to play sport where he is on a level

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Office Telephone 01280 821334

He tells us he’s always been extremely passionate about football and loves playing the game so is delighted they have managed to get a visually impaired team started in Hampshire. He plays as a striker at HVIFC like his footballing idol Robbie Fowler, and is currently Hampshire’s leading goal scorer. He is also an FA level 1 football coach and helps coach the team.

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FEATURE

playing field with fellow athletes.

He’s made many new friends and met some inspirational people and says he would recommend VI football to everyone!

Ben Good is 37 years old and the treasurer of the newly formed Hampshire Visually Impaired Football Club. He is also a player (although he says he is the first to admit he is probably the weak link at the back!) He is one of the lowest sight category players (B1), but players with sight up to a level of B4+ can participate.

Ben said “Losing my sight has been a long and gradual process, but whilst I have some peripheral vision left, unlike most RP sufferers, I have no central field left. This means I have only ever had a vague idea of what my family look like, and makes playing football fairly difficult, but I would encourage anyone who is thinking of taking up a sport who is VI to join us at HVIFC. There is a great friendly group, welcoming both men and women to train and play in the national league. It is

great for increasing your fitness and building your confidence. “ The club committee have worked very hard to get the club up and running and has recently received funding from Sport England. If anyone would like to join or find out more, they can either visit the team’s Facebook Page entitled Hampshire Visually Impaired Football Club , contact Aaron, the Club Captain, at az_fowler@hotmail.co.uk or telephone: 07775 844951 for more information.

www.rpfightingblindness.org.uk

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NEWS

New RPFB trustee confirmed for 2014 We are excited to tell you we have a new RP Fighting Blindness trustee joining the board in 2014. Dr Elizabeth Graham FRCP DO FRCOphth, Consultant Medical Ophthalmologist at St Thomas’ Hospital, London and Consultant Neuro-Ophthalmologist at the National Hospital for Neurology and Neurosurgery, will be the first board appointment of the new Charitable Incorporated Organisation.

Dr Graham is currently responsible for the Medical Eye Unit at St Thomas’ Hospital which is a unique department staffed by both Physicians and Ophthalmologists .

Her chief clinical interest is retinal vasculitis and viral retinitis particularly in patients with HIV infection.

She is a lead assessor for Ophthalmologists on Professional Poor Performance for GMC and previously Medical Adviser to the Iris Fund for Prevention of Blindness and now Member of the Previously Consultant Research Strategy Advisory Group Ophthalmologist for CRC Division of to Fight for Sight and Council Rheumatology between the years Member of the Frost Foundation.

1986 to 1998, Dr Graham graduated Dr Graham is also a member of the in Medicine in 1972 from St Committee of Higher Medical Thomas’ Hospital Medical School, Training of Medical and did postgraduate training in Ophthalmologists for the United General Medicine and Neurology before starting Ophthalmology and Kingdom and is on the Examination has postgraduate qualifications in Committee of Royal College of Ophthalmologists. both subjects (MRCP - 1975, DO 1978, FRCOphth -1988, FRCP We are very pleased to welcome Dr 1992). She undertook research in Graham into the organisation and the basic mechanisms of retinal feel sure her contribution will be vasculitis. very valuable.

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FUNDRAISING

ING New York Marathon 2013 success!

On Sunday 3 November 2013, Ciaran Ivers, Niall Ivers, Sian Ivers, Zachary Peires and Sonja Carey all ran the New York Marathon for RP Fighting Blindness. The event proved a huge success with all our runners completing and on target to raise around £5,000 each!

Sonja Carey, who has been fundraising for the organisation for several years, tells us she completed the marathon in four hours and six minutes, knocking 35 minutes off her London Marathon effort. Sonja told us she highly recommended it for anyone who has done the Virgin London Marathon and wants a fresh challenge.

More excitingly still however, we’re very pleased to tell you that Sonja’s boyfriend Nick proposed to her after she completed the race! We want to wish them congratulations and every happiness in the future!

Sonja said “It certainly made for a mind blowing weekend! I still haven’t stopped smiling and feel

very lucky!”

Obviously we can’t guarantee a marriage proposal at the end of the race, we can however guarantee that you’ll feel an amazing sense of achievement and will be raising some much valued funds for our work! If you’re interested in running for us, please contact Michelle Carter at the office on michelle@rpfightingblindness.org.uk or call 01280 821334.

email: info@rpfightingblindness.org.uk

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FUNDRAISING

Foreign Currency Appeal Do you have any foreign currency lying around in a drawer or flight bag from your last holiday?

Perhaps it’s too small an amount to worth changing so you’ve just held on to it, or maybe you keep meaning to, but forget?

RP Fighting Blindness is launching a Foreign Currency Appeal for all coins and notes from any country. Please do consider sending us your left over holiday money - even a

relatively small denomination can equal a large amount if enough people do it!

Older currencies no longer in use also have a value to collectors, so if you have any old Francs, Pesetas or Lira, please send those too! We’ll keep you updated as to how much we raise.

Please send any notes or coins to: RP FCA PO Box 350 Buckingham MK18 1GZ

World Record Skydive Attempt 2014 Are you brave enough to be part of a World record Skydive attempt Saturday 14th June 2014 and raise money for RP? We need people from all over the country to make a sponsored parachute jump on our behalf and now and be part of this amazing in return we are willing to pay for it! challenege. Email Airfields will be confirmed as soon michelle@rpfightingblindness.org.uk as possible. Register your interest for further details.

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Office Telephone 01280 821334

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FUNDRAISING

RP Fighting Blindness Christmas Cards Christmas is nearly upon us, so don’t forget, you can purchase our attractive range of 2013 design Christmas cards on the RPFB website using a credit card, debit card or PayPal account!

At just £4 for a pack of six with envelopes plus postage, they’re great value. You can also purchase cards by calling the office on 01280 821334.

Once again, talented artist Tina Wray, who has RP herself and has just 5 per cent vision remaining, has produced four delightful 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. www.rpfightingblindness.org.uk

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EVENTS

Leeds Patient Information Day RP patients and families were invited to our third annual “Meet The Researchers” patient information day, this year held at Weetwood Hall, an excellent and readily accessible conference centre on the outskirts of Leeds.

The event was delivered on 18 October in partnership with Mr Martin McKibbin, Consultant Ophthalmologist and his team at Leeds’ St James University Hospital.

Teaching Hospitals, as it is important to all of us to ensure that good information is made available As in previous years the event to patients. As a result of this the included a number of presentations event was free of charge to from scientists and clinicians participants. working on retinitis pigmentosa and David Head, Chief Executive at RP related retinal dystrophies, question and answer sessions, and Fighting Blindness, said “These the chance to meet the researchers ‘Meet The Researchers’ events have become an important part of our informally over refreshments.

Topics included genetics and gene work because there is such a thirst therapy, stem cell research, retinal for good information amongst patients and families. There is also, implants, and the use of increasingly, a proliferation of pharmaceuticals and were misinformation present." presented by eminent speakers from several important centres.

You can find out about other similar We are grateful to Mr McKibbin for events by telephoning Michelle at including this event in a programme the office on 01280 821334 or funded by the NIHR and Leeds michelle@rpfightingblindness.org.uk.

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RESEARCH

NHS England to consider reimbursing “bionic eye” treatment for RP Second Sight Medical Products Inc.’s Argus II Retinal Prosthesis, the world’s first approved device intended to restore some functional vision for people suffering from blindness due to outer retinal degenerations, is currently undergoing assessment by a group advising NHS England.

The Argus II System works by converting video images captured by a miniature camera housed in the patient’s glasses into a series of small electrical pulses that are transmitted wirelessly to an array of electrodes on the surface of the retina. These pulses are intended to stimulate the retina’s remaining cells resulting in the corresponding perception of patterns of light in the brain. The patient then learns to interpret these visual patterns thereby regaining some visual function. Second Sight gained European approval (CE Mark) for the system in 2011 and FDA approval in 2013. It is the first approved retinal prosthesis

anywhere in the world, and the only such device approved in the USA. Robert Greenberg, MD PhD, President and Chief Executive Officer at Second Sight, says: “We very much hope that patients in England will soon be able to experience the life changing benefits from our prosthesis already enjoyed by RP patients elsewhere in Europe and in the USA. The UK has been instrumental in the clinical research of the Argus II.” David Head, Chief Executive at RP Fighting Blindness, said: “RP Fighting Blindness has been following the work of Second Sight and their surgeons with great interest for several years and to see this now culminating in the prospect of the Argus II device being funded for RP patients through the NHS is very exciting.”

RPFB is tracking the progress of this story closely and we look forward to updating you in the coming months. www.rpfightingblindness.org.uk

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RESEARCH

RP Fighting Blindness joins with other sight loss charities to fund grant awards RP Fighting Blindness has joined forces with a number of the UK’s leading sight loss prevention and treatment charities to invest nearly £160,000 into 11 new pioneering eye research projects.

Coordinated by Fight for Sight, the charities Birdshot Uveitis Society, British Thyroid Foundation, Childhood Eye Cancer Trust, International Glaucoma Association, Nystagmus Network, Polymyalgia Rheumatica, Giant Cell Arteritis UK, Thyroid Eye Disease and Uveitis Information Group Scotland, and of course RP Fighting Blindness, have come together to help fund mutually beneficial research collaboratively.

thyroid eye disease, nystagmus, birdshot chorioretinopathy, retinoblastoma, uveitis, glaucoma and retinitis pigmentosa.

In addition to this Fight for Sight has awarded over £200k to 13 other small grant awards addressing conditions such as; age macular degeneration, Stargardt’s disease, diabetic retinopathy, Acanthamoeba keratitis, keratoconus and congenital eye defects. In total nearly £360k will The research, which will take place be invested into key eye research at universities and hospitals across projects around the country.

Great Britain, including Moorfields Dr Dolores Conroy, Director of Eye Hospital, UCL Institute of Research at Fight for Sight stated, Ophthalmology, University of “This research is absolutely vital, Birmingham, Southend University both for people living with leading Hospital, Cardiff University, causes of sight loss who have University of Manchester and extremely limited treatment University of Liverpool, will options, and for those who are investigate the following losing their sight through rare eye conditions; giant cell arteritis, conditions.”

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Office Telephone 01280 821334

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RESEARCH

Genetic Testing: Attitudes and Understanding Recent research in Leeds entitled “Understanding of and attitudes to genetic testing for inherited retinal disease: a patient perspective� has been published in the British Journal of Ophthalmology.

considered genetic testing to be good or very good and would be likely to undergo genetic testing if offered. Most supported the provision of both diagnostic (in someone with visual symptoms) and predictive (in someone without symptoms but who is at risk) Mr Martin testing, but support was less strong McKibbin and colleagues were for testing as part of family awarded money planning. Most participants felt that genetic testing should be offered by the National only after a patient has received Institute for Health Research information about the process of to determine testing, the possible risks and current understanding of and benefits and the potential attitudes to genetic testing for consequences for other family inherited retinal diseases. Just over members. However, many did not 200 people with RP and other realise that this information would retinal diseases agreed to take part usually be provided by a genetic and many were recruited through counsellor.

RP Fighting Blindness. All participants completed a telephone As reported on the RP Fighting questionnaire and then 50 were Blindness website, the researchers invited for a subsequent face-toconcluded that the adults with face interview in order to explore inherited retinal disease strongly various themes further. support the provision of publically funded genetic testing. It is hoped Although self-reported these findings may help to understanding of genetics and influence future access to genetic genetic testing was very mixed, almost 90% of the participants testing within the NHS. www.rpfightingblindness.org.uk

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CASE STUDY

Mount Kilimanjaro Climbing Challenge As a political journalist, Joe Churcher is used to making sure he’s not in the dark at summits. But when it came to scaling the highest peak in Africa he had no choice in the matter.

The reason? To get to the top of Kilimanjaro means climbing the equivalent of a Ben Nevis in the pitch black and midnight visits to toilet tents pitched precipitously close to sheer drops. So despite being a keen walker, a veteran of tough RPFB treks and generally determined not to let his eyesight stop him taking on any challenge in life, the 41-year-old had always ruled out an attempt on the nearly 6,000-metre-high monster.

Most people with RP will know the delight that greets the arrival of those first morning rays to pierce the gloom, especially at this time of year when we have to leave the home before dawn.

He had not reckoned though on the famed powers of persuasion of David Head - who was up against a self-set deadline to conquer the world’s tallest freestanding mountain before a milestone birthday.

But for Joe - as he stripped off the torches from his head, knee and hand that had helped him navigate rocks, scree and zigzags behind his brilliant mountain guide Abas - this one was a particular personal triumph.

One cunningly-timed text message later - it’s amazing what one will agree to as a new year dawns - and Joe found himself committed to a trip to Tanzania. And so it was that

Wind back a few days and things had started ominously - a bleeding forehead the result of trying nothing more challenging than walking the 20 metres from the

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the intrepid pair found themselves perched above the clouds on the “roof of Africa” , exhausted and delirious, marvelling at the rising sun glinting off the unlikely sight of glaciers near the equator.

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CASE STUDY dinner table to the coffee plantation lodge before even setting off for the mountain. Nor was Joe encouraged about his chances when a wronglymemorised route back from the WC sent him straight to the wrong tent and inches from snuggling in with a honeymooning couple. Thankfully by that stage of the trip, the rest of the great-natured group had not only come to understand RP - helped by one trekker being a geneticist no less - but to be reliably on hand to probably easier in many ways than jump in to avert pitfalls. getting across Waterloo station at Or if pits aren’t dramatic enough, rush hour. how about crater falls?

“The lesson for me is that even if RP It’s fair to say that without one of makes it hard to do some everyday the Tanzanian guides spotting a things most people take for granted, beyond-peripheral-vision precipice, it needn’t prevent us taking on other it would have been Joe Versus the challenges plenty of fully-sighted Volcano without the happy people would shy away from.

Hollywood ending enjoyed by Tom “So long as you’re never shy of Hanks and Meg Ryan. Since asking for help when you need it, returning to the UK - after a welldeserved break wildlife-spotting in anything is possible.” the Serengeti - Joe has been busy Joe, who has autosomal dominant trying to encourage other RPers to RP and is at least the fourth challenge their own ideas of what generation of his family to have it, the condition stops them doing. has so far raised more than £3,000 from the Kilimanjaro climb for RPFB. “Climbing a huge mountain in the dark? If you’d told me a year ago I’d His next quest will see him rejoin have done that I would have the RP trekkers on the flatter but laughed at you,” he said. no-less gruelling trek across the Sahara in April.

“But believe it or not, it was www.rpfightingblindness.org.uk

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FUNDRAISING

Carrots NightWalk Glasgow In September, Scottish RPFB members Liz Jackson and Mary Findlay (an aunt and niece respectively), both of whom have autosomal dominant RP, completed the Glasgow Carrots NightWalk with their friends, raising over £3000 for the RPFB Gene Appeal.

Liz found this quite a challenge because she has very little central vision, especially in the dark, but she is delighted to have raised funds for research which should help younger members of the

family, like her niece and nephew Rachel and Sean Findlay.

Liz and Mary are hugely grateful for all the support they received from family and friends especially, June, Jenny, Marilyn, Aileen and Kevin. They told us they very much enjoyed the experience, as they got an intriguing and unusual perspective of a major city on a Friday night!

They reported the event was very well organised by Fight for Sight with a hilarious comedian (with RP) launching the event, good-natured, caring marshals all the way and local church providing a rest break.

If you’re interested in taking part in future Carrots NightWalks, visit the RPFB website for details. Thank you to everyone who took part across the UK.

Stride for Sight 2013 Many thanks to Margaret & Ted Newson for firstly obtaining a £500 cheque from CSMA for a Charity of the Year donation to RP Fighting Blindness, and also for organising another very successful and well run Stride for Sight event on the first Sunday of September, which raised over £2000! Keep up the fantastic work both of you and also a big thanks to all who attended and raised sponsor money.

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FUNDRAISING

London to Paris Cycle fundraising Jon Bagshaw and his friend Chris recently completed a London to Paris cycle ride for to fundraise for us. Jon’s wife was diagnosed with RP in February of this year and her brother, father and uncle also have the condition.

Jon and his wife have two young son who may have RP, which was Jon’s motivation to raise funds for our research. Jon and Chris raised over £3,000, having been in training for several months in preparation.

A friend kindly volunteered to act as support driver in another friend’s van! A great effort for which we’re very grateful!

Tandem Skydiving for RP RPFB member Chris Harrison recently completed a tandem skydive to raise money for the charity.

As you can see from the photo he sent us, he had a lot of fun, as well as raising money for our vital work!

He described the experience as fantastic, and we certainly hope he’ll do more for us!

If you’re interested in skydiving for RP Fighting Blindness and being part of world record breaking skydive challenge, turn to page 8. www.rpfightingblindness.org.uk

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FUNDRAISING

Dwyer family raise considerable funds for RPFB

Ted and son Matthew took part in the Tandem Challenge and are pictured on the steps of Coventry Cathedral.

The six day, 350 mile journeythrough major towns and cities in the Midlands and North of England. Not only this, later in September Ted and his wife Dinah walked the coastal path around the Isle of Wight. In total Ted, Dinah and Matthew have raised approximately £10k in sponsorship for RP Fighting Blindness, for which we are very grateful. Their dedication to our cause as a family is generating vital funds for us to continue our work. We’re sure you’ll want to join us in thanking them.

The Way of the Roses coast to coast cycle ride for RPFB Alan Walters and Terry Ottaway recently completed The Way of the Roses coast to coast cycle route Morecambe and Bridlington to raise funds for RP Fighting Blindness.

They cycled an impressive 190 miles over and three days, plus carried all their kit! They told us they were a bit saddle sore at the 18

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end but thankfully this hasn’t put them off fundraising in the future for us, and hope to complete some more rides for the charity next year. We want to extend a big thank you for this great effort which has secured over £1,700 for the charity!

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NEWS

Clyde Sea Lochs & Islands keel boat introduction for visually impaired people Flotilla Week 2014 Colin Fowler of The Visually Impaired Sailing Association of Great Britain asked us to share with you all information about the 2014 Clyde Sea Lochs and Islands keel boat introduction for visually impaired people flotilla week.

The event shall be running from Saturday 12 Saturday 19 April next year and would make an ideal introduction for visually impaired people that may not have sailed before but would like to gain experience of the sport.

Supported by The Scottish Enterprise Board, Sailaway Scotland, Rothsay Harbour trust and Portavadie Marina & Leisure Complex, the keel boat sailing for visually impaired people experience, comprising of a flotilla week with 4 or 5 chartered yachts for up to 25 visually impaired participants will commence from Largs Marina on the Clyde estuary.

The fully inclusive cost will be ÂŁ215 for each participant. This includes a transfer from Glasgow Airport or Glasgow Central railway station to Largs marina, plus return transfer, reception evening dinner at Largs Sailing Club, seven nights accommodation aboard a MCA category two coded modern wellappointed charter yacht, six days sailing around the Clyde Sea Lochs and Islands, all fuel, marina costs and food aboard the yacht. Also included are two Breakfasts ashore during the week, a farewell dinner party at Largs sailing club at the end of the week.

This is a fantastic opportunity for any visually impaired people who have an interest in sailing. The Visually Impaired Sailing Association of Great Britain can provide great facilities and experienced instructors - for further information, please visit http://www.visagb.org.uk/clydeflotilla.html or contact directly at info@visagb.org.uk or 07901573570.

email: info@rpfightingblindness.org.uk

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NEWS

Articles for the Blind Following a report from RNIB about some of its members being concerned that the privatisation of Royal Mail will affect the Article for the Blind scheme, we wanted to put our members’ minds at rest too.

We have received a number of calls to the RP Helpline and head office regarding this, with people understandably concerned about the future of the scheme. The Articles for the Blind Scheme however is protected by law under section 31 of the Postal Services Act 2011. This means it is included as a minimum of any postal service, regardless of organisational changes or indeed privatisation.

The scheme can only be changed if

an amendment is proposed by the secretary of state and voted for by both houses of parliament.

No changes to the Articles for the Blind scheme have been proposed by the government at this time, and it will not be affected by the privatisation of Royal Mail. RNIB has publically stated that it would campaign against such measures should they be proposed and RP Fighting Blindness would support such action.

You can speak to Royal Mail about the Articles for the Blind scheme by contacting their Articles for the Blind hotline on 0845 607 6140.

Newlyweds request wedding guests make donations to RPFB Chris and Norma Hopes, of Malvern in Worcestershire, recently got married and asked their wedding guests to make donations to RPFB, rather than buying them gifts. This generous act has resulted in several hundreds of pounds 20

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donated to the charity, and all at head office were touched by the letter we received with the cheques.

We feel sure you’ll want to join us in wishing Chris and Norma both love, light and blessings in their married life together.

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EVENTS

Retinal Awareness Group (RAG) meeting 2014 The Retinal Awareness Group (RAG) is holding its annual Blackpool Weekend conference at the Carousel Hotel across 28 - 30 March 2014.

RP Fighting Blindness is proud to deliver this event in partnership with volunteers from our NorthWest branch.

We have exclusive use of the hotel with full modern facilities The RAG social and activity including a lift to all floors and weekend regularly attracts over 100 easily accessible rooms. All attendees, some excellent medical presentations are amplified and a loop system is made available in speakers and a wide range of activities. RAG also aims to provide the main conference room for information and advice about living those with hearing loss. A grass with RP, Usher’s Syndrome and area and other facilities for guide many others. dogs are close by.

Programme: This is only a preliminary programme and will be updated as information becomes available on the RPFB website.

FRIDAY 28 MARCH 12.00-17.00 Stalls 14.00

Welcome and Introductions

14:30

Speaker (To be announced)

15.30

Tea and Coffee Break

16.00

Speaker (To be announced)

17:00

Free time

18:30

Dinner

20.30

Quiz and Social in the Bar

email: info@rpfightingblindness.org.uk

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EVENTS SATURDAY 29 MARCH 08.00

Breakfast

09.30

Group sessions

10.30

Tea and Coffee Break

11.00

Ahoora Baranian, PhD Student Anglia Ruskin University Ahoora will present some of the results of his current research into mobility and balance of people affected by RP.

12.00

Lunch

14.00

Scientific Session This afternoon session is set aside for discussions on RP, RP Research and a medical / scientific Q&A panel.

Introduced by David Head, Chief Executive at RP Fighting Blindness Keynote Speaker Professor Paulo E. Stanga Professor of Ophthalmology & Retinal Regeneration, University of Manchester Consultant Ophthalmologist & Vitreoretinal Surgeon, Manchester Royal Eye Hospital Other speakers and panelists will be announced as soon as possible

17:00

Free time

18:30

Dinner

20.30

Entertainment and dancing

SUNDAY 30 MARCH 08.00

Breakfast

09.30

Speaker (To be announced)

10.30

Tea and Coffee Break

11.00

Assistive Technology (Speaker to be confirmed)

12.30

Lunch and Event Close

The cost per person for a double or twin room is ÂŁ155, which includes two nights bed, breakfast, evening meal, lunch on Sunday and servings of tea and coffee over the weekend.

Please book direct with the Carousel Hotel on 01253 402642

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NEWS Obituary – William Dennis We were saddened to hear the news that RPFB member William ‘Bill’ Dennis of Oxted, Surrey passed away earlier this year. Bill had been a member of the old Croydon Branch since it formed back in 1995 and regularly attended

with his wife. He is sadly missed by its members. RP Fighting Blindness benefitted from a collection at his funeral for which we are most grateful. We would like to pass our thanks for this and sincere condolences to Bill’s family.

2014 running events registration now open Enjoy running and want to help RP Fighting Blindness continue its work?

If so sign up to Team RP 2014 and raise much needed funds for continued research into finding a cure for RP. Registration is now open across all running events in 2014 call Michelle Carter at head office on 01280 821334 for further information or email michelle@rpfightingblindness.org.uk.

Recycle for RP! Recycle your old mobile phones and inkjet printer cartridges to raise money for RP Fighting Blindness!

Just pop your old mobile or used inkjet cartridge into one of our freepost envelopes and post it! It’s as easy as that!

Please phone 01280 821334 to request freepost envelopes. www.rpfightingblindness.org.uk

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95590 RP FB Winter 149 Newsletter R02_Layout 1 29/11/2013 11:56 Page 24

EVENTS

The 2014 RP Calendar January

February

March 2nd Silverstone Half Marathon

April

May

June

12th - 14th RAG Weekend

24th - 25th London 2 Brighton Challenge

14th World Record Jump For Sight 21st RP Conference 27th Retina International Conference 28th - 29th The Grand Union Challenge

12th - 19th RPFB Sahara Trek 13th Virgin London Marathon

July

25th BUPA 10K

August

September

23rd - 24th The Isle of Wight Challenge

13th - 14th The Thames Path Challenge Date TBC Carrots NightWalk

October

November

December

2nd New York Marathon

RPFB Annual Prize Draw

For more information about any of our events email michelle@rpfightingblindness.org.uk or call 01280 821334.

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The RP Helpline 0845 123 2354