Look Forward
Issue 156 September 2015
New horizons atRP Fighting Blindness
We look forward to 2016 and beyond.
It’s been a busy and exciting few months at RP Fighting Blindness; we’ve been preparing for the 40th Anniversary in 2016, a new Chief Executive has joined the ranks at head office, our annual RP Conference in London was a great success, the Helpline Training Weekend has been held and a whole host of fundraisers have taken place across the country.
Contents
Letter from the ChiefExecutive
Christmas Cards
Three PeaksChallenge Success
RP Conference 2015Review
New Gene TherapyResearch
Sound for Sight 2015
Tough Mudder
Helpline TrainingWeekend
Abbott Family Fun Day
Letter from the Chief Executive
Tina Houlihan
I’m delighted to have joined RP Fighting Blindness as Chief Executive, and I’d like to take this opportunity to thank the trustees, the team at head office and the charity’s supportersI’ve met so far for making me feel so welcome.
RP Fighting Blindness is at an exciting time in its history, and of course marks a major milestone next year with its 40th anniversary. I’m in the process of running through ideas with the charity’s staff and trustees to increase our presence in the sight loss community, improve our information and support services and drive our research programme to new levels.
The organisation has an excellent reputation for stimulating research and providing concise, trustworthy information about RP; I want us to build on this and work more closely with other sight lossorganisations, so everyonewith RP can feel confident aboutboth their present and future.
I look forward to meeting many ofour members and supporters overthe coming months; there areexciting times ahead for RP FightingBlindness and we very muchappreciate your continued support.
Please do feel free to email me withany questions or suggestions youmay have regarding the charity
RPFB Christmas Cards
Christmas will be upon us soon, so don’t forget, you’ll be able to purchase our attractive 2015 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’regreat value. You’ll also be ableto purchase cards by callingthe office on 01280 821334.
We expect these cards to beavailable to purchase at theend of September.
Once again, talented artistTina Wray, who has RP herselfand has just five per cent visionremaining, has produced twodelightful images and donatedthem to the charity.
In addition, the printing of thesehigh quality A5 cards has beendonated free of charge, whichmeans every penny of the salevalue of the cards goes tosupport the work of RP FightingBlindness. Each card containsa simple ‘Season’s Greetings’message.
We’d like to say a big thank you toTina and her husband Gary for alltheir hard work on this project.
Three PeaksChallenge success!
In July, a team of RP Fighting Blindness supporters took up The Three Peaks Challenge 2015 - they had great time while raising money for the organisation!
The Three Peaks Challenge ran from20 July to 25 July 2015 and took inMount Snowdon, Scafell Pike, andthe mighty Ben Nevis.
As the three highest peaks inEngland, Wales and Scotland, thisrepresented an exciting challengeto both visually impaired and fullysighted participants alike. The totaldistance walked was roughly 26 mileswith a total ascent of 9,800 feet.
Everyone agreed it was an amazing exhilarating experience.Accompanying the party on thechallenge was David Head, RPFB’sformer Chief Executive, a doctorand an experienced expeditionleader. Added to these a local guidejoined the group at each site formaximum safety and to add somelocal knowledge.
We had 29 participants on the trek,including RPFB trustee ColinMcArthur and his wife Linda, RPHelpline volunteer Katy Newitt andher daughter Emily, Richard Boggiewho recently featured in our 40th Anniversary fundraising campaignand his brother Stephen, and awhole host of hardy regular RPFBtrekkers who have supported us foryears on such challenges.
Upon completion, many of thetrekkers talked about teamspirit, determination and sheerendurance having gotten themthrough the various challenges.These are common themes inour treks.
Approximately £30,000 will beraised from this amazing trekkingchallenge - a great fundraisingtotal. We’d like to say a huge thankyou to everyone who took part, andto congratulate them on completingThe Three Peaks Challenge 2015.It’s no mean feat, whether sightedor visually impaired and everyoneput in 100 per cent effort come rainor shine!
If you’re interested in takingpart in future treks, contactMichelle Carter at Head Officeon 01280 821334.
RP Conference 2015
June saw the annual RP FightingBlindness conference take placeat the Pullman Hotel in London’sEuston.
With over 130 people in attendance,expert medical speakers,presentations from high-achievingpatients and exhibition stands toview, the day was certainly a busyone. The conference and our regularpatient information days are amongthe largest gatherings of RPpatients and professionals in theUK and we always encouragedelegates to talk to and mingle witheach other, the charity’s staff, ourtrustees, the scientists and guestspeakers.
The conference programme isvaried each year and reflects thedifferent facets of the charity’swork: patient support and medicalresearch. Our first speaker wasRobert Taylor, RP patient andauthor of recently published novelLionheart, who gave some insightsinto what has inspired him topublishing success. Niall McMurtry,Evidence and Service ImpactProject Manager at RNIB, followedand gave a presentation aboutempowering those experiencingsight loss.
Long-time RPFB member GlenDrew presented the ever popularRP Awards with The Lynda CantorFounder Award for Contribution tothe Future of the Charity going toBhavini Makwana, The John GeorgeAward for Volunteering presentedto Sid Pritchard, RP Fundraiser ofthe Year named as Patrick Moran,and The Roger Green Award forSpecial Contribution going to RPFBtrustee Stephen Jones.
Before the scientific presentationsgot underway, recently appointedtrustee Rachael Stevens gave anupdate regarding the 40thAnniversary Appeal, and explainedhow people could get involved nextyear.
Professor Michael Cheetham, Professor of Molecular Cell Biologyat the UCL Institute ofOphthalmology and member of theRP Fighting Blindness MedicalAdvisory Board, played host to thescientific session with talks fromProfessor Robert MacLaren,Professor of Ophthalmology at theUniversity of Oxford and ProfessorAlison Hardcastle, Professor ofMolecular Genetics at UCL Instituteof Ophthalmology. They presentedon Developing Treatments forRetinitis Pigmentosa and Geneticsand The UK Inherited RetinalDystrophy Genome Projectrespectively, later taking questionsfrom the floor. After this ProfessorJohn Marshall MBE, medicaltrustee at RP Fighting Blindness,presented the award named afterhim; The John Marshall Award forRP Scientist, to Professor RobertMacLaren.
The RP Question Time sessionwhich followed our scientificspeakers is always a great chancefor delegates to put their queries toour panel of expert speakers. Asever, the session proved lively andinformative, with questions comingfrom all over the floor aboutresearch, genetics and the progressbeing made on current projects.
The day concluded with theorganisation’s formal AGM wherethe formal business matters of thecharity were discussed and votedupon.
We would like to take thisopportunity to thank RetinaImplant for their sponsorship of the2015 RP Fighting Blindness annualconference and would like to thankeveryone who attended, and ofcourse the speakers and volunteerswho helped make the day possible.
New Gene Therapy Research
Tweaking photoreceptors toproduce a nerve growth proteincould open up new avenues oftreatment for patients withretinitis pigmentosa, according tonew research.
The findings come from a study byan international team of scientists,including researchers in Oxford,Sheffield and London, whichshowed that gene therapy canprovide long-term protection forphotoreceptor cells in an animalmodel of retinitis pigmentosa.
Mice lacking rhodopsin, thelight sensitive pigment of rodphotoreceptors, were used as ananimal model of the condition.Four-week-old animals were givendoses of a modified virus in oneeye in order to make their retinasproduce a human protein, calledciliary neurotrophic factor (CNTF).
CNTF acts in the nervous systemand has been investigated as atreatment in conditions such asamyotrophic lateral sclerosis(known ALS or Lou Gehrig’sdisease), but may be toxic athigh doses. Using a modifiedophthalmoscope to monitor theretinas of mice, theresearchers observedthat CNTF preservedphotoreceptors, but that thenumber of cone cells decreasedrapidly between 8 - 24 weeksafter treatment in animals whoreceived a low dose of CNTF andcontrol animals.
They were able to show that thephotoreceptors preservedthrough the treatment retainedtheir function and were able tosignal correctly to the brain, asmeasured by the response ofmice to visual stimuli.
“Our results in this mouse modelof retinitis pigmentosa clearlyshow that CNTF treatment canboth give life-long protection tocone photoreceptors andpreserve useful vision... this is avery promising study,” said leadresearcher Professor RobertMacLaren, professor ofophthalmology at the NuffieldLaboratory of Ophthalmology.
More than six months later,genetic analysis showed that inmice which received high-doseCNTF a number of genes linkedwith retinal disease were almost90-times more active than in thecontrol mice.
Professor MacLaren added: “Ourresults suggest that directlyincreasing activity in the class ofgenes that were upregulated in ourhigh-dose CNTF group has thepotential to provide a novel,targeted treatment for retinitispigmentosa and a range ofneurodegenerative diseases.”
The research is published in the journal Molecular Therapy.
Other News
The RP Fighting Blindness AnnualResearch Report to April 2015 isavailable on our website;this is a review of researchfunded by us from April 2014 toApril 2015 with lay summaries.
The RP Genome Project willbe entering its second year inNovember 2015. We’ll keepyou up to date with futuredevelopments.
Sound for Sight 2015
Laura Westcott, Sound for Sight organiser, explains her motivations for creating this unique musical event.
Last year a friend of mine, Yvette Chivers, told me she had a degenerative sight loss condition called retinitis pigmentosa. Yvette explained that she was gradually losing her eyesight and that the condition was currently incurable.
I wanted to do everything I could to help her so I spoke to RPFighting Blindness and asked if they could help me create a "blind" challenge, safely, and in good taste. So they sent me seven pairs of sight-loss simulators that decreased my vision throughout the course of the week, and introduced me to some amazing mentors such as Ashish Goyal, who is the world’s first blind trader and now a friend.
I did the challenge and my journey was broadcast each day onInsight Radio and filmed by Iconic Steps. I decided to organise a concert to mark the end of the week on World Sight Day, so I came up with Sound for Sight.
What makes Sound for Sightdifferent to any other concert?
The audience wears sight-losssimulators during the show, whichnot only simulate what it is like tohave RP, but also heighten the livemusic experience by taking the focusaway from the visual performance.
Last year’s host, Jeremy Vine, saidit was the best concert he’d been toand I have to agree. We evenreceived a video message from TheMayor saying there "no bettercause than Sound for Sight!"
This year, Sound for Sight will takeplace on Thursday October 8th -World Sight Day - at London’s TheTabernacle and also The Mint in LosAngeles - with surprise "headline"artists and performances fromWillow Robinson, Izzy Bizu, LukeFriend, Kelvin Jones, Bella Figuraand many more.
Tickets for the London show arenow on sale at just search for ‘Sound for Sight’.
For more information visit: SoundforSight.com
British Visually Impaired Judo
James Thomas, Senior PerformancePathway Manager at The BritishJudo Association recently got intouch with us as he’s keen topromote VI Judo to members of thesight loss community.
Judo is one of the world’s mostexciting and competitive Olympiccombat sports, it is also a martial artthat is rooted in tradition, a traditionthat values respect, self-disciplineand friendship above all else.
You may not know however thatJudo is also a fiercely competitiveParalympic sport that has itsown European and WorldChampionships, and everyfour years features in theParalympic Games.
Specifically aimed towards athleteswith a Visual Impairment, VI Judohas exactly the same format andrules as its Olympic counterparts.The Great Britain Paralympic Judoteam even train with the Olympicteam on a daily basis at the British
Judo Centre of Excellence inWalsall, a truly inclusive sport!
British Judo has a thriving VI Judo community with players throughout the country enjoying all the benefits of a martial art and competitive combat sport. With the Tokyo Olympic Games five years away, there is no better time to get involved in this fantastic sport. If you are interested, please email the British Judo Paralympic Team on
Focus on - Jack Hodgson
Weight Category: 100kg+ (Heavyweight)
Nickname: Big Jack
Home Town: Grimsby
Age: 19
Visual Impairment: Retinitis Pigmentosa
Years Taking Part in Judo: 8
Judo Club: Grimsby Judo Club
Where do you train: I’ve just started training at the British Judo Centreof Excellence as a full time athletewith the Olympic & Paralympicteams.
Highest achievement to date: Silverat the IBSA World Games in 2015
Goal: Win a Medal in Rio and GoldMedal at the 2020 Paralympics inTokyo
Career Plans: Once I achieve mygoals in Judo I am planning tobecome a PE Teacher
Jack’s advice to anyone with aVisual Impairment: Come and have ago at Judo. It’s changed my life. I’vetravelled to some fantastic placesalready in my career includingBrazil and Korea, and I am hoping tovisit many more interesting places.Judo has helped develop myphysical fitness and my confidence; I’d recommend it to anyone. Younever know where it will take you.
BUPA London 10k
10,000 metres of pure pleasure!
The 2015 BUPA London 10,000 takesplace at 10.00am on Monday May30th 2016.
Register now for Team RP 2016and be part of our Anniversary
Team raising money for the40th Anniversary Appeal fund!
The race starts (and finishes) at TheMall and follows a clockwise routearound the City of Westminster andthe City of London. Runners passmany of London’s famous sightsincluding, Admiralty Arch, Nelson’sColumn, St Paul’s Cathedral,Mansion House, Bank of England,Leadenhall Market, The Monument,Millennium Bridge, Tate Gallery,Cleopatra’s Needle, London Eye, BigBen, Houses of Parliament andWestminster Abbey.
If this sounds like your sort ofchallenge, please call MichelleCarter, Fundraising Events Manager,on 01280 821334 for furtherinformation.
Skydive for RP!
If you’re looking for a fun way to raise money for RP Fighting Blindness, but not sure how to go about it, why not consider skydiving? All you have to do is raise a minimum of £395 in sponsorship, and you skydive for free!
You will be jumping a tandem parachute jump, with an experienced skydiver; no experience or expertise is required.
A Tandem parachute jump is suitable for sighted, visually impaired and blind people alike, so there’s nothing to hold you backfrom this exciting activity!
Want to know more? you want to discuss any aspects ofthis exhilarating fundraiser.
Tough Mudder - Are youtough enough?
If you want to raise money for RPFighting Blindness this yearwhile undertaking a fantasticphysical challenge, look nofurther than Tough Mudder.
Tough Mudder is a 10-12 mileobstacle course designed by the
Special Forces to test all-aroundstrength, stamina, teamwork,andmental grit. A number of differentcourse types are available, indifferent locations across thecountry to test your abilities.
Tough Mudder is not a race but apersonal challenge - the goal issimply to complete the courseand you’re encouraged to helpothers complete too. It’s aboutteam spirit!
Everyone is welcome and we haveguaranteed places!
With dates and venues across theUK, all you need to do is chooseyour date, sign and return yourform and get prepared!
Just visit find your event and cause, join theteam and take on your challenge!By visiting the Tough Mudderwebsite you can learn more aboutthe events, see participant photosand get a flavour of the kinds ofchallenges awaiting you!
Previous participants have talkedabout the exhilarating challenge aTough Mudder course represents,the team spirit and pure endurancerequired! We guarantee you’ll feel ahuge sense of achievement uponcompletion!
For furtherinformation andregistration formscontact either MichelleCarter or Karen Murfetat Head Office bycalling 01280 821334,or .
Turning an idea into a reality
By Richard King, RPFB member
At 47, and having been registered blind now for 15 years, one of thehardest things for me to change was the way I would ride a bike. Whenthe degeneration of retinitis pigmentosa got to the point where I was
forced to sell my prized mountain bike, I purchased myself a tandem.
Alas, this was just not the same,and with my partner Samanthabeing hard of hearing, it wasn’tvery practical for us to be on twowheels, let alone a pleasure. Sowe started looking for other waysto enjoy cycling.Just over a year ago, we tried out
a side by side, or more commonlywhat is known as, a "sociable"tandem, and was exactly thealternative to the traditionaltandem that we were after,although at three times the costof a regular tandem, just notsomething we could afford. So,determined not to let this get inmy way, I set about on my questto create a more affordable option.
Having given this quite a bit ofthought, I wondered if you couldactually take a pair of regularbikes and link them togetherretrospectively; within a few weeksof research I stumbled across acompany that had already createdsomething similar in the USA. Bytaking a standard pair of recumbentsand joining them together side byside, had achieved the vision that Ihad had - more importantly, at amuch more affordable price! Ieventually had these bikes shippedover from the USA but what reallyspoiled this for us was the cost ofimporting these all this way.
So, the next step was to speak tosome engineers and frame buildersin the UK and see if we could createsomething very similar here? To cuta very long story short, for thebenefit of squeezing this into therequired amount of words, we foundsomeone willing to do exactly this!
So far, we have taken a pair ofstandard bikes that are availablehere in the UK and are currentlytesting these with the connectionsthat a local engineer has createdfor us, with great thanks to the charity REMAP. Also on the drawing board is a pair of similar recumbents that I am hoping to do the same with during 2015.