Look Forward issue 132 - Autumn 2009

Namibia Trek: Join Us!

Autumn 2009 Newsletter: Issue 132

Fundraising News

Inside ...

Members’ Conference and AGM Report New Research Projects Funded Branch News Raise Funds in a Trek to Namibia Defending Attendance Allowance Milton Keynes Accessible Theatre AGM 2009 Report Musical Fundraising Events Goods & Services to Help Research TV Quiz Opportunity Still Calling Run for Us to Fund Research ... and more.

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Simply Christmas 11th December 2009, 7.30pm The Stables Theatre, Stockwell Lane, Wavenden, Milton Keynes MK17 8LU Simply Christmas is a concert in aid of RP Fighting Blindness, showcasing some of the up and coming talent from Milton Keynes and beyond. Acts include Helen Rourke who has RP and a student at the RNC Hereford taking a performing arts course and Joe Scripps a young male soloist covering the 60’s to the present day.

RP Fighting Blindness is a UK based charity that funds research into inherited blindness and provides support through its network of volunteer branches.

With successful clinical trials in gene therapy at Moorfields and other research projects underway, the ongoing need to raise further funds is ever present and that’s where you come in...

Come and join us for a night of song and Christmas fun!

Call the Box Office to book your tickets!

01908 280800 www.stables.org Tickets only £15.00 per person

BRPS, PO Box 350, Buckingham, MK18 1GZ Tel 01280 821334, Email info@brps.org.uk Web www.brps.org.uk

Contents Letter from the Chief Executive

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Report from the Annual General Meeting 2009

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Minutes of the 33rd AGM June 2009

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Membership Subscription ..

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Visually Impaired Kids: East Kent Group ..

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Research News: UK and International

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Namibia Trek and Mibia Anixab Community Project

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Fundraising News ..

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RNIB Campaign: Defending Attendance Allowance Accessible Theatre: Milton Keynes ..

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Crossword Solution No. 5

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Branch News ..

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Volunteer Alert: Quiz Member Eggheads Goods and Services to Raise Funds

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2009 Whitecliff Weekend

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Crossword Puzzle No. 6 (Autumn 2009) ..

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Music for Sight Concert ..

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About RP Fighting Blindness (Charity No. 271729) We are dedicated to funding research into treatment for retinitis pigmentosa (RP). We also provide support and information for people with RP. Our Helpline is on 0845 123 2354 or at helpline@brps.org.uk.

Our contact details:

PO Box 350, Buckingham, MK18 1GZ Tel: 01280 821334 E-Mail: info@brps.org.uk

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Letter from the Chief Executive Dear Members Mixed research news this quarter, as those of you that read our email bulletins will know. We announced funding for a new project supporting Dr Rachael Pearson, but unfortunately our bid to the National Lottery for funds for Professor Wright’s work in Edinburgh was rejected. We believe this was simply because the Big Lottery Fund received far more applications than it could possibly support.

We had a successful June conference in Cardiff, launching our new patient information film (DVD) and hearing from Dr Da Cruz about his progress with retinal implants. The conference is an increasingly important way that members can keep themselves informed about our progress, so I hope in London next year we can encourage even more of you to come along.

On the fundraising side, there is no doubt that the recession is biting hard. Our original aspirations to increase income this year will be difficult to achieve, as trusts, companies, and individuals alike are all cutting back on spending. Membership income and volunteer fundraising becomes even more important in these difficult times, so it is fantastic to see branches, runners, trekkers, and event organisers all rallying to the cause so well.

I will finish with a plug for our concert on 30th October. You can see the details on the back page of this Newsletter, and please book tickets as soon as possible. The performers are doing this free of charge to help our members. I hope many of you will reciprocate by supporting the event and encouraging your families to join us.

Kind regards, David Head MBA In addition to the report on the AGM at the beginning of this newsletter, you can find, a few comments from David Head, our CEO, on his blog http://brpsnews.wordpress.com 4

Report from the 2009 Members’ Conference

by David Head, Chief Executive 120 members made the trip to Cardiff on 20th June for our 2009 Members’ Conference, consisting of four plenary sessions including our formal AGM. The minutes of the AGM are published below.

The three other sessions were the launch of our new patient information DVD, produced with Channel 4, a presentation from Sarah Rochira, Director of RNIB Wales, on the provision of welfare services and access to benefits for visually impaired people, and a medical research presentation, given

by Dr Lyndon Da Cruz of Moorfields Eye Hospital.

Dr Da Cruz’s speech covered recent progress in the development of retinal implants, with updates on recent clinical trials. He outlined how advances in bioelectronics and surgery now offered real hope to people with no vision. Over 20 patients around the world are benefiting from the pioneering work of Second Sight, a US company developing the Argus II implant.

A CD recording of all four session of the Members’ Conference are available on request from the office, covering: 1. The AGM (44 mins) 2. Launch of the Patient Information DVD (10 mins) 3. RNIB Wales on Welfare Services (58 mins) 4. Dr Lyndon Da Cruz (retinal implants) (68 mins) There is no charge, but if you wish to donate towards the costs (about £3), this is greatly appreciated. __________________________________________________________________________________________________________

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Minutes of the 33rd AGM of RP Fighting Blindness Our AGM was one of four sessions at our Members’ Conference on 20th June. These minutes will be formally approved at the 2010 AGM.

Chairman’s Address Roger Green welcomed about 120 members to the meeting and thanked everyone for attending. Apologies had been received from Sir Alan Rudge, Tony Moore, Mark Birdwood, Sophie Montgomery and Alan Foster.

The minutes of the 2008 AGM were agreed by those who had been present to be a true record. There were no matters arising.

Roger presented the 2008 Annual Report and Accounts and highlighted several points: 1. Non legacy income in 2008 was 40% higher than in 2007 2. Trustees awarded a number of new grants in 2008 3. Grant commitment is now at a record level 4. We made a successful bid to the National Lottery 5. We recruited two paid fundraisers 6. We have strengthened information and support services 7. There have been a number of staff changes Roger also noted that since year end a new Trustee, Mr Don Grocott, has been appointed. Roger thanked all of the volunteers for their work over the year including the committee members, branch officers, helpline team, and volunteer fundraisers.

Treasurer’s Report Mr Henry Bennett presented the 2008 accounts, highlighting that: 1. 2008 was “a good year”, with income excluding legacies increasing by 40% from £534k to £756k. Total income was down reflecting a large legacy received in 2007.

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2. Research expenditure increased from £428k to £483k.

3. Commitment to research stands at £1.5m, and reserves at £1.8m.

4. It is essential that fundraising continues because of (1) this high commitment (2) plans to expand and (3) the need to ride out the current recession.

Henry indicated that the recession is impacting on all charities as trusts rely on investment income to fund their grants, and companies are cutting charitable giving. He also reported that the Trustees have a conservative investment strategy and we have not lost significant sums through stock market or overseas investments.

Overall the finances are “very sound”. Finally Henry reiterated the importance of the branch fundraising and thanked branch officers and volunteer fundraisers for their work.

Resolutions Trustees Report and Accounts were approved by a show of hands. The Treasurer’s recommendation that Davies Mayers Barnett be reappointed as auditors for 2009 was approved by a show of hands.

Chief Executive’s Report Roger introduced the Chief Executive, David Head, who spoke about 2008 and introduced plans for the next 5 years.

2008 was busy but successful, not only financially but in raising awareness and increasing activity levels. A highlight had been the organisation of the trek to the Sahara Desert, which generated £50,000.

The event epitomised what we need to do as a charity – raise money, meet challenges, empower people, raise our profile, do exciting things, make a difference. David extended his thanks and congratulations to the trekkers and to Michelle in helping administer the event and invited participation on a new event in 2010 to Namibia.

Another highlight was Sally’s success in securing money from a trust to launch our Outreach Project. David announced Sue Drew’s appointment as Outreach Officer. He said that these successes 7

demonstrate we have adopted the right approach recruiting a team to deliver growth, and that the recently published 5 year plan was built on this. David highlighted the following points from the plan: 1. We intend to grow income to £2.5m.

2. We intend to increase research expenditure by £1m.

3. To do this means expanding the staff team, learning from the experience of other charities.

4. At any stage, investment will only take place if finances allow. For example, if recession slows growth, then the 5 year plan might become a 6 year plan.

5. We will remain a membership focused organisation. Volunteers and branch fundraising remain critical.

6. Branch monies will always be paid into our Medical Research Fund.

7. We are committed to our Information & Support service.

8. Consideration will be given to reconstituting the charity as a Company Limited by Guarantee.

9. The Management Committee is to be replaced by two working groups – Fundraising and Service Delivery - with member representatives on these groups - Voluntary Fundraising Manager, Branch Liaison Officer, Retina International Representative, and Information & Support Officer.

David concluded by stressing the importance of volunteers working with the growing staff team, and handed back to Roger Green, adding his personal thanks to members for their support.

Resolutions Roger commended the 5 year plan to members and invited questions to the panel. There were no questions.

Roger asked for a show of hands to endorse the charity’s 5 year plan and aspirations for growth. This was strongly supported and thus carried.

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Roger asked for a show of hands to endorse the dissolution of the old Management Committee in favour of the two new groups. This was strongly supported and thus carried.

Colin McArthur was nominated by the Chairman as Voluntary Fundraising Manager, Carole Holmes as Information & Support Officer, Kevin Johnson as Branch Affairs Manager, and Stephen Jones as RI Representative. These were seconded by David Morgan (Wales), and a show of hands demonstrated strong support.

Roger closed the meeting by thanking all those present for attending. __________________________________________________________________

Membership Subscription We have had to recently review the membership subscription, with a few changes planned from January 2010.

Firstly, the subscription will be increased to ÂŁ20 each year due to increased costs, for example in the printing and distribution of your newsletter, and office overheads.

We believe this is still really good value for money, and will ensure we are sustainable so we can continue our fight against inherited blindness. For existing members, this will apply at the next renewal. If you currently pay by Standing Order please could you to make this amendment in plenty of time with your bank. If you pay by cheque, you will receive the usual reminder with your Christmas newsletter.

Secondly, we have made arrangements with Paypal, the secure payment system, so that members can pay by credit or debit card online. Details will be published in the Christmas newsletter. Payment comes directly to us, saving us the cost of sending renewal reminders.

Thirdly, we have been working to update and correct our membership database. If your details need amending or, for example, your household is receiving two copies of the Newsletter where only one is needed, do let us know at info@brps.org.uk or call 01280 821334.

Finally, please let us know if you want to change the way you receive your newsletter – in print, on CD, by email, or in Braille.

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Visually Impaired Kids – East Kent Group Sam is 5 years old and has RP. His parents Matt and Cat Clark have decided to get involved in setting up a group. It is aimed at giving kids with visual impairment opportunities for monthly outings and events that challenge them and help them develop confidence and independence. They are looking for like-minded parents and families.

The idea is fun of course, but also allowing kids to see that they are not isolated, and that the obstacles they face day-to-day are shared by other kids. It will also create a valuable support network for parents. The first step will be planning a picnic or barbecue locally as interest emerges. If you want to get involved contact Cat Clark (tel 01303 276777 or mattandcat@tiscali.co.uk) or Hazel Groves (tel 01304 210153 or Hazel.Groves1@btinternet.com). They would love to hear from you.

We’d like to hear about other similar initiatives or experiences of kids coping with RP, so contact us at info@brps.org.uk.

calendar dates calendar dates calendar d Blind Cricket Practice Sessions (6.15pm at Bolton Cricket Club on Mondays and Stockport on Tuesdays). Calling all ages to help us form a Lancashire Blind Cricket team.

Blind cricket uses a small football with ball bearings, and different rules for different classes of sight. You don’t have to be great 10

as we have coaches on hand to help. To find out more contact Ashley Simcock on 07958089640 or at asimcock@btinternet.com.

Stride for Sight Weekend is 26th and 27th September. Walks include Hill Head to Lee-on-theSolent, the Humber Bridge, and the Forth Road Bridge. A list of other walks around the country can be found on our website (www.brps.org.uk).

Research News: UK and International We reported in previous news items on the ground-breaking clinical trial led by Robin Ali, Professor of Human Molecular Genetics at UCL Institute of Ophthalmology. Thanks to this, a significant degree of 18year old Stephen Howarth’s vision was restored. Below is an update on this and Stephen gives his view of the impact of the experimental treatment on his life almost a year on. We also report on two new funded projects, plus an international project on a recessive RP form.

Gene Therapy for Leber’s Congenital Amaurosis: New Phase Professor Robin Ali FMedSci, UCL Institute of Ophthalmology Professor Robin Ali and colleagues at UCL Institute of Ophthalmology and Moorfields Eye Hospital have begun the next step in their dose escalation clinical trial to treat a form of Leber’s Congenital Amaurosis (LCA) caused by defects in the gene encoding the RPE65 protein.

Results from the first phase of this clinical study were reported in New England Journal of Medicine in May 2008.

Data from three young adults with early-onset severe retinal dystrophy demonstrated that gene therapy improved retinal sensitivity and improved visual mobility in one patient. Completion of the current phase of the trial is anticipated in the second half of 2010.

Professor Ali’s team have recently received approval from the regulator to include younger LCA patients and to treat patients with higher doses of an adeno-associated virus (AAV) vector containing the RPE65 gene.

The higher dose of vector has now been administered by subretinal injection at Moorfields Eye Hospital to two adult patients referred for inclusion in the trial by Dr Ingeborgh van den Born of The Rotterdam Eye Hospital in The Netherlands.

“The results to date with the higher dose are very encouraging and we are looking forward to the tests in children which will start in the autumn,” stated Professor Robin Ali, who is leading the study.

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“The deterioration in visual function experienced by individuals with LCA results from a progressive retinal degeneration compounded by amblyopia caused by stimulus deprivation during early childhood. For these reasons the benefit of gene delivery therapy is expected to be greatest when applied at an early stage in the condition.”

Update on Stephen Howarth After taking part in the clinical trial in 2008, Stephen gives his impressions of the impact on his life almost a year on.

“Things are pretty much the same since my op. I have not noticed any further improvements, but as I have said before, taking part in the trials and seeing the DVD of myself going through the maze gave me such a boost in confidence. This made me more independent.

“I started going out with my friends more and travelling alone. Before, I tended to stay at home when friends asked me to join them on an outing, I would come up with an excuse because I didn’t want to be a burden on them, always relying on them to assist me. I now feel more able to travel about and I don’t mind asking for help now, which is something I wouldn’t have done before.

“I haven’t done much this year apart from my trek in the Sahara, which was amazing, but I am planning to go back to college in September if I can secure a place. I am due to go back sometime soon for my 2-year check-up at Moorfields, so I will find out then if any further improvements have developed.

“All in all, I still consider myself very lucky for being selected to take part in the trials and, again, I would like to thank all involved for all the hard work and effort they are putting into finding a cure one day.” __________________________________________________________________________________________________________

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ÂŁ190,000 for Dr Pearson / Professor Ali Project A research team led by Dr Rachael Pearson and Professor Robin Ali has been awarded ÂŁ190,000 to further photoreceptor precursor cell migration and integration into retinal tissue.

Replacement by stem cell transplantation of the eye’s light-detecting cells lost in retinal diseases is an exciting potential way of restoring vision. However, until recently, attempts to do this have been largely unsuccessful. Thus far, none of the stem cell populations transplanted has fulfilled the dual requirement to both migrate into the recipient retinal tissue and then subsequently form new photoreceptors. Recently, this research team has shown that photoreceptor transplantation is possible but only if the donor cells are at a critical developmental stage. They must be cells committed to becoming photoreceptors but not yet fully mature. These cells can migrate into the recipient retina, make functional connections and improve vision.

One of the biggest hurdles is getting sufficient cells transplanted to restore significant levels of vision. This project will contribute to advancing transplantation efficiency in those with retinal dystrophies. A key feature of retinal disease is the activation of a population of support cells within the eye, called glia. During injury these cells undergo a process called reactive gliosis, during which they lay down something called a glial scar. This scar serves to separate and protect the healthy retina from the damaged area and the project will show whether this is also likely to present a barrier to the transplanted cells.

Enzymes will be used to digest away components of the scar - two proteins integral to scar formation, glial fibrillary acidic protein (GFAP) and vimentin. Gene therapy and a technique called RNA silencing will reduce the amount of GFAP and vimentin produced by the glial cells.

The team expect to be able to markedly improve the level of donor photoreceptor precursor cell migration and integration and as a result, visual function. ____________________________________________________________________________________________

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Advancing Cell Transplantation & Visual Improvement in RP RP is the focus of a new funded research project led by Professor Andrew Lotery. It focuses on therapies which can replace lost or damaged retinal cells.

RP is caused by a number of genetic defects all of which ultimately lead to loss of cells surrounding or in the retina.

Using iris tissue from patients undergoing glaucoma surgery, the researchers wish to make new cells which are similar to and behave like photoreceptors. Photoreceptors are light sensitive cells responsible for vision. It is loss of these cells which leads to deterioration of vision in RP. To produce photoreceptor like cells from human iris, the research team will genetically modify iris cells with a small piece of DNA which will reprogram the cells to become like photoreceptors in appearance and function. The researchers want to find out if these changed cells can become part of and survive in a mouse retina which is degenerating in a similar way to RP. Two types of biodegradable plastic scaffolds will be attached to the cells as supports. The aim is to determine whether cells survive and enter the retina better in a degenerative environment when attached to this. __________________________________________________________________________________________________________

International: New Gene Therapy Clinical Trial Planned for RP Source: Foundation Fighting Blindness Researchers from the United States, China, and Saudi Arabia are planning to launch a gene therapy clinical trial in 2010 for a recessive form of RP caused by variations in the gene MERTK. Taking place in Saudi Arabia, the trial will be funded

by Foundation Fighting Blindness. Investigators in this study will be using a gene delivery mechanism — an adeno-associated virus or AAV — currently being in other gene therapy clinical trials underway for Leber’s Congenital Amaurosis, a severe form of RP. MERTK is a gene involved in the photoreceptor regeneration process that occurs nightly in the human 14

retina. Every night, the tips of photoreceptors are essentially “chewed off” and disposed of. Subsequently, the tips regenerate. When the MERTK gene is defective, the disposal process doesn’t work properly, and debris and waste products accumulate causing photoreceptor death and vision loss.

Speaking about gene therapy for retinal diseases, US-led Foundation Fighting Blindness said, “While we are still at a relatively early stage in these clinical studies, the momentum moving forward is impressive. The progress and expansion provides real hope for people losing vision to these devastating conditions.” See http://www.blindness.org. __________________________________________________________________

RNIB Campaign: Defending Attendance Allowance The government’s recent Green Paper, “Shaping the Future of Care Together” proposes abolishing Attendance Allowance (AA) and putting the money saved into the general social care pot. The RNIB is seeking your views and experience to build its response to the paper.

RNIB believes that the social care fund gap should not be plugged - at the expense of AA. It is very strongly opposed to the loss of this important non-means-tested benefit, which helps those 65+ with the extra costs of disability. Over 53,000 blind and partially sighted people can spend the benefit as best suits them. Under the new system, it would become means-tested, cash-limited and rationed. The likely consequence is that many new blind and partially sighted claimants would be excluded (not existing claimants). Some other disability benefits may be affected, including the care (not mobility) component of Disability Living Allowance.

In putting together its campaign and response against these new measures, the RNIB is asking you to respond to the government on this issue before 13 November 2009, with specifics of how the benefit is currently used by you or someone you know and the impact without it.

Respond directly at careandsupport@dh.gsi.gov.uk or by post to the Care and Support Team, Room 149, Richmond House, 79 Whitehall, 15

London, SW1A 2NS. Please copy the RNIB in at gfimister@rnib.org.uk or, for postal responses, write to Geoff Fimister, Campaigns Team, RNIB, 105 Judd St., London, WC1H 9NE. You can also discuss this with the RNIB by calling 020 7391 2123. __________________________________________________________________

Accessible Theatre – Milton Keynes Milton Keynes Theatre is celebrating 10 years of activity. This year, it offers a great programme of drama and dance with accessibility in mind. We highlight performances with audio description below. Book at Milton Keynes Box Office 0844 871 7652 or visit www.ambassadortickets.com/miltonkeynes.

A Christmas Carol. The Northern Ballet Theatre’s A Christmas Carol combines traditional ballet and colourful, captivating theatre and well-known Christmas carols. 17 Oct 2.30pm - Audio-described by NBT. The Pitmen Painters. The National Theatre perform their Evening Standards Awards “Best New Play” by award winning playwright Lee Hall. 24 Oct 2.30pm – Audio-described

by Vocaleyes.

The Sound of Music.

Connie Fisher returns as Maria starring alongside Michael Praed as Captain von Trapp.

The perfect family treat! 11 Nov 2.30pm & 7.30pm – Audio Described

by Irene Richards.

Cinderella. A glittering traditional Panto, with Buttons played by Bobby Davro and Cinderella as Louise Dearman. Live orchestra.

13 Jan (mat & eve) - Audio-described by Anne Hornsby.

Tosca. Sat 03 Apr 7.15pm - Audio-described by WNO.

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Namibia Trek and Mibia Anixab Community Project Join Us! 11–22 September 2010 This 12-day trek and school restoration project in Namibia will represent another big milestone for RP Fighting Blindness as we forge ahead with our fundraising for RP research. Sign up for this new challenge to help. At the same time, you’ll be supporting education in the developing world. This is a fantastic opportunity, open to all, with tasks allocated to suit visually impaired people.

In Namibia, the natural environment rules supreme. With spectacular sunsets, plentiful wildlife and the huge expanses of desert, there’s a real sense of freedom. The Anixab community at Sorris-Sorris in Damaraland consists mostly of Damara-speaking people, and a 17

smattering of Herero folk. Livestock farmers, they eke out a living in this harsh environment bordering the Namib Desert to the north of Brandberg Mountain (at 2370m the highest in Namibia). They keep goats, some cattle and sheep, whose numbers fluctuate with the unpredictable rainfall. A few roadside shops and curio stands attract trade from passing tourists. This is the land of the famous desert elephant, black rhino, giraffe, zebra, springbok, oryx, kudu and hyena.

The slopes dropping from the Brandberg to the Ugab are dotted with granite outcrops, and along with the grass and mopane covered plains, are immensely scenic. The Anixab settlement is right in the middle of this fantastic landscape on the edge of the Ugab riverbed. While water and electricity are available, scant maintenance and school supplies are provided. So the school and the whole community are finding the requirements of learning and education a tremendous challenge.

The fundraising Target per person is ÂŁ3,250. If you would like to take part in the trek and project contact Michelle; michelle@brps.org.uk

Outline Itinerary DAY 1 Flight UK to Windhoek DAY 2 Windhoek to Uis mountains to Damara Plains. Meet venture leader at Hosea Kutako airport. Coach to Uis mountains (5hrs). Trek to Damara Plains (4km) to camp overnight.

DAY 3 Windhoek to Uis Mountains to Damara Plains. Trek (12km) down into the Ugab valley passing granite outcrops on the vast grassy plains. Camp near the dry Ugab river bed.

DAY 4 Damara Plains to Anixab. Follow the course of the Ugab (16km), towards the project site at Anixab and camp about 1km away under huge riverine trees.

DAY 5-8 Project Work. Work on renovating the school playground, camping at night (4 days).

DAY 9 Trek to Brandberg. Say goodbye to the community, and trek west (12km) to Jonas, to camp at the foot of the Brandberg Mountain.

DAY 10 Brandberg to Okahandja Lodge. Walk (5km) to the road for coach to Okahandja Lodge for our celebration night.

DAY 11 Okahandja to Windhoek (airport) Leisurely breakfast, wood market visit. Transfer to Windhoek (2 hours) for UK flight.

DAY 12 Arrive back in the UK 18

fund raising fund raising fund raising fun from our volunteers across the UK

Three Peaks Challenge The Poole Dick Associates Team (pictured on top of Ben Nevis) successfully completed the Three Peaks Challenge on the 19th & 20th June. Through this, they have raised £2,771.50 to date towards RP Fighting Blindness (BRPS). They climbed the three highest mountains in the UK (Snowdon, Scafell Pike and Ben Nevis) in 25 hours 48 minutes. Yes, you’re right - not exactly near each other!

They overcame a few stumbling blocks, including two members of the team (Kev and Ben) being sick on Scafell, and difficult traffic conditions and road works. This meant they did not quite make the 24 hour target, but were not far behind. You can still make a donation, via the team’s Just Giving website, which also has some extra photos of the weekend. (http://www.justgiving.com/pooledickassociates). _________________________________________________________

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Sponsor our intrepid Everest trekkers - Lauren Carter, Jo Spiller, Steven Cunningham and Liz Cassidy at www.justgiving.com. (Listing under their individual names).

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Asics Runners A big thanks and round of applause to three speedy runners, who took part in the Asics 10km event in London on 12th July to raise funds for RP Fighting Blindness.

Adam Ziff did it in 1 hour 14 minutes, Niall Ivers in 1 hour 9 minutes, and Kieran Ivers in 52 minutes 54 seconds. They must have enjoyed it, since they now intend to sign up for next year’s event!

Do remember if you want to help raise funds, set yourself a personal challenge, and get fit at the same time, you can run for us in anything from a 5k run to a full marathon.

See http://www.runtofightblindness.org.uk. __________________________________________________________________

Crossword Solution No. 5 (Summer 2009) S U M ME R E U N S T I M I D H T T O I E G O T R I P E B S S F E T E B S P A E C H O D D O C D S A T C H E L I E O E T U L I P

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O F F E R I U H O L I D A Y Y G T B E T H A P M O A T S S R A E E P E N D I A I D I C E D O L A I N F E R S

The winner of crossword puzzle no. 5 in the summer edition of the newsletter 131 is Mrs Lynn Gibbs.

She wins a CD player.

branch news branch news branch news b from our volunteers across the UK HAMPSHIRE BRANCH Steve Harris

spare a little time, please do get in touch.

We held a very enjoyable Annual General Meeting on 18 April in the pleasant surroundings of the St Lawrence Parish Room in Winchester. There has been a change to our committee, and Karen Harris was elected to take over as our Secretary. We were delighted to welcome Michelle Carter, who described her role as Events and Volunteer Coordinator, and our members Keith Hatter, Christine Medway, Colin McArthur and Stephen Jones gave us some interesting talks about facilities for visually impaired people, and updates on things RP. We completed the meeting by selecting the winning tickets in our Prize Draw, which made a profit of just over £400.00.

Adrienne and Steve opened their garden in aid of the Research Fund on a warm and sunny afternoon in June. Despite the low turnout, we still managed to raise over £200, so thanks to members who came along and helped.

Our street collection season is now drawing to a close, so many thanks to our small and loyal band of volunteers who have helped us collect money for the research fund. However, we are anxious to find more help to shake the cans to keep up our efforts. So, if you are able to

As part of Stride for Sight we’ll be walking from Hill Head to Leeon-the-Solent and back again on Saturday 26 September. Please do come along with friends to support this walk, and enjoy the stunning views to the Isle of Wight. Contact 023 8047 6894, or hampshirebranch@brps.org.uk for information on any of the above.

EAST OF SCOTLAND BRANCH Jim McLean It is with sadness I have to report the passing of one of our members, Jean Hay. We’ve had many a laugh and I was always glad to see her and her husband Gordon at our meetings,

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Jean could ask pertinent questions of our medical speakers, and at times of me, and her humour was always on the button. I know I speak for all when I say she will be missed.

Alan Wright and colleague Dr Kevin Chalmers from the Eye Pavilion in Edinburgh, and a speaker to be confirmed from Guide Dogs for the Blind. The last branch official meeting in Brum was really enjoyable and useful for sharing knowledge and experience.

Fundraising goes on apace with members having garden parties, choir recitals, cycle runs, walks into the great Scottish interior, collections at family do’s, full and half marathons planned as well as the stalwarts regularly contributing. Two members plus a friend north of the border are among those going to Everest Base Camp (Steve, Liz and Jo mentioned on the fundraising pages). It makes me tired thinking of that!! Sally Smith at Head Office has organised approaches to Scottish Trust Funds which have so far raised £500. And the Dundee Nurses’ Retirement Fellowship has chosen us (thanks to Aileen Christie) to receive a cheque for several hundred pounds (details in the next newsletter).

In Hull on 21st May, I met with four other RP sufferers in a focus group which was arranged on behalf of Martin McKibbin, a Consultant Ophthalmologist at St James University Hospital Leeds.

I’ve “booked” the Forth Road Bridge for the Stride for Sight day on Sunday the 27th September starting at 1pm. Parking is available on the south end of the bridge. For information, email me.

Our last meeting is on 7th November starting at 11am guest speakers will be Professor

Martin and his colleague Dr Barbara Potrata wanted to talk to people with RP about their view of genetic testing for inherited eye disease and what their hopes and fears of it might be. The discussion group’s idea was approved by the Ethics Dept at Leeds University, and at Martin’s

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Several Dundee members are organising a stomping musical evening on 16th October (8pm) at The Friary with three bands: Mad Parrots, Boogalusa, and the Baffie Band. Tickets for "Ceilidh for a cure" are £10 from Mary on 01382 730590 jimuckmclean@blueyonder.co.uk

YORKSHIRE BRANCH David Stevens

request, I organised the meeting in Hull, which proved very interesting.

The results of this study will be used to formulate a questionnaire to assess attitudes towards genetic testing in line with patients’ experiences, attitudes and beliefs, and help identify which of these are shared between patients with the same or comparable conditions.

Hull branch have raised £495 through collections since May. There’s been a big drop in money collected this year, with people perhaps not as able to give. If you can help in the Hull area, please get in touch. I am on my own for most of the time collecting.

Twenty members attended the Yorkshire Branch AGM in Leeds on April 25th. David Head CEO was our guest speaker, and gave a very interesting speech, so our thanks goes to him. Thanks also to Christine Cooper who ran in the Leeds 10k Marathon and raised £120 for BRPS. The meeting decided to hold our Stride for Sight at the Humber Bridge again this year on 26th September. All are welcome to take part and help us raise research funds. For details, contact David (01482 856040) or Richard (01709 700198)

In memory of…

Our thoughts are with the family of Jean Hay, one of our active members in the East of Scotland Branch, who passed away recently.

Volunteer Alert Reserve Quiz Team Member We have 5 volunteers to take part in a quiz team for the ever popular TV quiz Eggheads, but we need a 6th, who will be our back-up in the event of anyone having to drop out between our entry being accepted and filming.

You need to have RP, have a good general knowledge, have at least one specialist subject, be comfortable in front of a camera and want to win. If you think you can help we would love to hear from you. Please contact David on 01280 821334 or 07720 444084. _____________________________ If you would like to contribute to the winter newsletter, the deadline for submissions is 10th November. Please send them to info@brps.org.uk.

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goods services goods services goods se The following are goods and services whose purchase will generate donations to us or other visual impairment charities. ___________________________________________________________________________________________________________

Sweet Support for RP Fighting Blindness This is definitely a tempting way to help us raise funds. My Little Wrapper designs personalised chocolate bars for all occasions, private and corporate.

Wrappers are tailor-made to suit your purpose, be it a wedding, party, birth or any other event you want to mark.

The wrappers are the creation of Jo Johnson, one of our members, who has kindly offered to donate 10p of her profits to us for every bar ordered. Prices vary according to the volume you require. For more information, contact Jo at mylittlewrapper.southsea@live.co.uk or call 02392 367034. Happy munching! __________________________________________________________________________________________________________

RP Christmas Cards These Christmas cards are A5 size and feature artwork by Sophie Birdwood, who has RP. Printed on quality heavy card, the message inside reads “Seasons Greetings”.

Five cards with envelopes costs £5, including delivery. Over half of the proceeds will support our work searching for treatments or a cure for RP – much better than the few pence usually donated by other charity cards. Send a cheque (payable to “RP Fighting Blindness”) or postal order to the office, including your name and address, and marking the envelope “Christmas Cards”.

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Lynda Cantor’s “My Vision of Hope” How about this book for a stocking filler for Christmas? The book is written by our founder, recounting her experience as a mother coming to terms with RP and describing how the charity was inspired. An essential read for anyone with RP. The book costs £5.00 for members in printed or audio format (including packaging). With publishing costs already covered, proceeds will go entirely to RP Fighting Blindness.

Send a cheque payable to “Lynda Cantor” to the office (see page 3) and include your name, address and the number of copies you require. __________________________________________________________________________________________________________

Maxine Turkington’s “Cooking for VIPs” Written by Stargardts sufferer Maxine Turkington, this 160-page large format book contains over 120 recipes graded according to complexity, plus hints and tips for a visually impaired person organising and using a kitchen. The books costs £12.95 plus £2.50 packaging & handling worldwide. An author donation of £3.88 is given per book sold via us. Call us or send a cheque payable to “Maxine Turkington” to the office (address on page 3). Include your name, address and the number of copies you need. __________________________________________________________________________________________________________

Cyberspace Support for Sight dannycassidy.net is a small but highly skilled web design studio, with clients in the business and not-for-profit sectors UK-wide. It creates fresh online experiences to communicate organizations’ objectives and make them stand out from the crowd. All websites adhere to the latest accessibility and web standards.

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Danny’s family is affected by RP and he has offered to donate 10% of the profits from any website development commission he undertakes if the client mentions RP Fighting Blindness. To see example sites, visit http://www.dannycassidy.net. For enquiries or an informal chat, contact Danny at danny@dannycassidy.net or call 0795 003 5064. __________________________________________________________________________________________________________

VIP Diaries This social enterprise offers reasonably-priced stationary for people with visual impairments. The first line of products, diaries and calendars, proved so popular that the range was expanded to writing pads with easily visible lines, A4 address books, an A5 Midi Diary and refills for the pocket diary.

Each product has been designed by visually impaired people for visually impaired people. To order and view prices and product examples, go to http://www.vipdiaries.co.uk. All profits are donated to charities that support visually impaired people. __________________________________________________________________________________________________________

2009 Whitecliff Weekend This will take place at Whitecliff Bay Holiday Park, Bembridge, Isle of Wight on 25th to 27th September.

This year’s challenge will involve the Bembridge lifeboat; our trustee Colin Macarthur will be “rescued” from the water and then take the helm of the lifeboat. Later there will 26

be 4 tribute acts showcasing groups from the 80's (Queen, Showaddywaddy, Madness and The Jam), and sponsored events including a fancy dress dip in the sea, Stride for Sight, and cycle around the island.

There will also be competitions such as 5-aside football, Come Dancing, plus a fete, auction and raffles.

To book, contact Whitecliff Bay on 01983 872671. For event details, call Linda on 01983 406661.

Crossword Puzzle No. 6 (Autumn 2009) 1

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Denise Leigh at the Butterworth Hall on 30th October.

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Name: ........................

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Tel: .............................

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Send your grid to: RP Members Crossword P.O. Box 350 Buckingham MK18 1GZ

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WIN two tickets to see

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Postcode: ...................

Closing date 30th Sept

------------------------------------------------------------------------------------------------Across 1. In a bad mood (5) 4. Dire smell (5) 8. Mod’s coat (5) 9. Disciple (7) 10. Flapped about (7) 11. Israeli flyers (2-2) 12. It’s bad (3) 14. Natural satellite (4) 15. Type of fruit (4) 18. Digestive tract (3) 21. Squishy mud (4) 23. Rare and strange (7) 25. Of a pig (7) 26. Dark side of the Earth (5) 27. Crowd troubles (5) 28. Mustela putorius furo (6)

Down 1. Scam, fiddle (3-3) 2. Whirlwind storm (7) 3. Young racehorse (8) 4. Acne sore (4) 5. Chip manufacturer (5) 6. Rests on the knee (6) 7. Beaches (5) 13. Annoyance (8) 16. Sun bed (7) 17. Policeman (6) 19. Tall structure (5) 20. Group of seven (6) 22. Swashbuckling hero (5) 24. Noise from a snake (4)

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Music for Sight An Evening with Denise Leigh 30 October 2009, 7:30pm Warwick Arts Centre, Coventry Featuring a selection of Denise’s favourite songs as well as works by Rachmaninoff, Prokofiev, Handel, Dvorak, Verdi, Bernstein and John Williams.

With Simon Callaghan (pianist) and The British Police Symphony Orchestra

Book now!

024 7652 4524 www.musicforsight.org.uk Please dress to impress!

A fundraising event for RP Fighting Blindness, registered charity 271729