Look Forward issue 142 - March 2012

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:52 Page 1

Look Forward Issue 142 March 2012 Registered Charity No. 271729

Inside Trustees Approve Research Grants Page 3 ACT Report Stem Cells as "Safe" Page 4 High Achiever Page 7 Driving RPYP Page 8

£1/4m Boost for RPFB A donation from a family trust of £200,000 in January has allowed us to commit to this year’s support for Professor Ali's gene therapy work and to approve two new grants.

As well as this fantastic sum for RP research, the trust also donated £50,000 to our general fund, allowing us to confidently make outreach a permanent part of our work and invest in our own future. More inside...

The RP Helpline 0845 123 2354

RP Awards 2012 Page 11 Prize Draw Page 15 Retina International Congress 2012 Page 19 Stars of our Community Page 20 ...and more

www.rpfightingblindness.org.uk

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:52 Page 2

NEWS

Letter from the Chief Executive David Head MBA Welcome to the spring edition of Look Forward.

This has been another busy quarter for us, planning lots of event activity for 2012, recruiting new staff, finalising the 2011 accounts and lots more. The support we have received from our members – and other RP’ers – throughout this has been fantastic and I wanted to take the opportunity to thank you all.

News this quarter includes Trustees approving two new grant applications for research projects, the charity receiving our largest ever individual donation of 250,000 and making our outreach work a permanent part of our portfolio.

It seems we are on a very positive thread and long may it continue.

I often take this opportunity to make a particular ‘plug’ for one of our activities. This time I’d love to encourage walkers out there – sighted, partially sighted and blind alike – to get involved in our biggest hiking challenge ever; 2

The RP Helpline 0845 123 2354

190 miles over 2 weeks (or perhaps do one of the half-treks available) along the famous Wainwright Coast-to-Coast walk in August. Do ask for or have a look at the details online and give it some thought.

Shortly, we will welcome a new Trust Fundraiser to our team: Laura Reynolds will be joining us in midMarch. Laura has experience in a similar post at QAC in Birmingham, please join me in wishing her every success, I’m sure she will be a valuable asset in our fight against RP. Enjoy your magazine and thanks again for all your support.

Chief Executive RPFB funds medical research into retinitis pigmentosa and also offers a range of information and support services to patients and their families.

PO Box 350 Buckingham MK18 1GZ E: info@rpfightingblindness.org.uk P: 01280 821334

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:52 Page 3

RESEARCH

Trustees Approve Two New RP Research Grants At their February meeting the Trustees of RP Fighting Blindness approved two new grants totalling just over £165,000. The grants are to Professors Alison Hardcastle and Clare Futter, both based at the UCL Institute of Ophthalmology in London.

Prof Futter is granted two years’ funding to complete a new project, "Mechanisms of photoreceptor degeneration in Choroideremia".

Choroideremia is a form of RP that generally affects males and there is estimated to be over 100,000 people with the disease worldwide.

The diagnosis is usually made in childhood and leads to blindness in men by their forties. Prof Futter wrote, “We have generated various mouse models of Choroideremia… cell death can occur by a number of different mechanisms and in this project we aim to identify the mechanism of cell death in our models. The study will increase our understanding of how photoreceptors die in choroideremia and other forms of RP too. More importantly,

this study may also identify targets for intervention in these diseases by directly targeting the underlying cell death mechanisms.”

Prof Hardcastle is awarded one year’s funding for her project, "Characterising a novel gene for X-linked RP". Though this is a shorter term grant than usual, if the gene is identified there will be scope for further work looking at how it causes RP when faulty.

In her application for funding Prof Hardcastle said, “We have used state of the art techniques to generate preliminary data, which pinpoints a candidate gene. We are keen to define the mutation in X-linked families and the many male patients attending Moorfields clinic, and this will provide molecular diagnosis for a proportion of these patients.

Importantly, we also plan to do extensive functional work on the novel gene and protein, and create a mouse model for the development of future therapeutic strategies.”

We wish both researchers every success and look forward to the outcomes of their work over the next couple of years. www.rpfightingblindness.org.uk

3

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:53 Page 4

RESEARCH

ACT Report Stem Cells as "Safe" Early results from the first human trial using embryonic stem cells to treat RP suggest the method is safe, say researchers. US firm Advanced Cell Technology reported that two patients who had received treatment were doing well, four months on.

Researchers hope that by injecting these cells into a diseased eye, they will be able to restore vision. The initial study involved just one patient with macular degeneration and another with Stargardt's disease, both registered blind. Each was given an injection containing the cells into one eye.

Trials of the technique have now started at Moorfields Eye Hospital, though experts warn it will be years before these treatments are proven. The aim of these first studies is to establish that the treatment, which involves manipulating stem cells to grow into the cells that line the retina, is safe to use.

ACT claim evidence shows the cells had attached to the eye's membrane and survived for the 16 week study. Most importantly, the procedure appears to be safe, causing no signs of rejection or abnormal cell growth. A full copy of the detailed report by ACT can be downloaded from our website www.rpfightingblindness.org.uk.

Inherited Blindness: New Genetic Testing Graeme Black, Professor of Genetics and Ophthalmology at Manchester University, last month announced a unique genetic testing service for patients with RP. The test will give many more patients a definitive diagnosis of their condition and allow some to 4

The RP Helpline 0845 123 2354

preserve their sight for longer with directed medical management and new treatments. The new test can analyse more than 100 genes in parallel, compared to fewer than 10 currently, and is based on next generation DNA sequencing technology.

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:53 Page 5

RESEARCH Professor Black said “This test has been developed to be as affordable as possible for the NHS. We are working with colleagues to make personalised medicine a reality for most NHS patients.”

David Head, Chief Executive at RP Fighting Blindness said “This is a big step for patients. More efficient diagnosis - and thus more accurate prognosis for sight loss - is key to enabling patients to make decisions about their future. We are delighted The service, for patients who have been referred to a clinical genetics to have supported Graeme’s work and seeing the results in terms of service, will diagnose conditions patient benefit is very satisfying. In including Leber congenital addition, efficient genetic testing is amaurosis and achromatopsia, as very important in progressing well as the two most common research into a cure or treatment, causes of syndromic blindness Usher and Bardet-Biedl syndromes. which is our ultimate aim of course.”

Treatment: The Dangers of remaining vision Misinformation damage or have other unfortunate The internet is a fantastic tool, but care is needed because there is misinformation out there too, some positively dangerous.

side effects.

An extreme example of the potential hazards of experimenting with unproven treatments was the We receive very many enquiries X-Cell Centre in Germany. Many RP about everything from the use of patients were attracted by the vitamins to the availability of stem offers from this centre last year, cell treatments. RP Fighting before it was shut down following Blindness urges anyone considering the death of a baby given a “stem such offers or advice to always talk cell injection” into the brain. to their own, trusted ophthalmologist, RP Fighting Blindness, the US who should be someone who is not Foundation Fighting Blindness, connected in any way with any Fighting Blindness Ireland and organisation offering treatment. other reputable organisations will The use of inappropriate continue to make you aware of supplements may, in some cases, research progress. www.rpfightingblindness.org.uk

5

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:53 Page 6

EVENTS

Carrots NightWalk - See London in the Dark 2012 Friday 21st September 2012 Raise funds for RP research in partnership with Fight For Sight by joining Team RP on a fantastic night time scenic walk around London.

Starting and finishing at the iconic BFI IMAX, the Carrots Walk route will take in some of London's most spectacular night time sights; the vibrant Southbank, the contemporary Park Plaza Hotel, the historic Shakespeare’s Globe, the

mighty HMS Belfast, the distinctive City Hall, the magical Tower Bridge, the imposing Gherkin in the heart of the City, the beautiful St Paul’s Cathedral, the spectacular London Eye and some of London’s real hidden gems.

6

The RP Helpline 0845 123 2354

For further information or to register please contact michelle@rpfightingblindness.org.uk or call Michelle on 01280 821334 Registration fee £25 with minimum sponsorship of £225 per walker.

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:53 Page 7

FOCUS

High Achiever Jacqui Vaughan My son Chris, 16, has Bardet-Beidl syndrome which brings many difficulties, by far the worst of which is the RP. He developed night blindness at a young age, but loss of vision from age 14 to 16 was very fast and happened at a crucial time leading up to his GSCE’s. Despite this, Chris remained focused and was determined to be successful and last year he passed 7 GCSE’s, including a B in history for which he has a real passion. His results have enabled him to go on to study history A level.

Towards the end of the evening Chris still hadn’t received a prize as it got to the last part where the headmaster gave his speech.

At the end of his speech, he said there was one more award to present, for the student who had impressed him the most during the academic year. He said that the young man who was to receive the prize had coped remarkably well, showing determination to succeed despite deteriorating vision along with other medical difficulties. He said that Chris had remained positive when life was becoming difficult, and mentioned the contribution he had made to school life in general, to the drama department and his passion for history.

As Chris went to collect his award, he got the biggest applause of the night.

He was so pleased and with every In November we attended the reason was incredibly proud of school speeches. Chris had been at himself. Following the awards there Hipperholme Grammar School in was a small reception where Chris Halifax until last summer, a school was treated like royalty with steeped in tradition. One of these is members of staff telling him how to award prizes at speech night for proud they all were of him. As for his outstanding achievements, and we dad, brother and myself we felt so had been told that Chris was to pleased that his achievements had receive a prize but didn’t know been recognised - the school had which. It was a lovely evening in seen what a difficult time it had been Bradford Cathedral with lots to be for Chris and that his attitude is an celebrated by many students. inspiration to many others. www.rpfightingblindness.org.uk

7

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:53 Page 8

CASE STUDY

Driving RPYP Rachael Stevens has been helping RP Fighting Blindness to get RP Young People (RPYP) off the ground.

Rachael has RP herself and has classic loss of peripheral vision.

She has enjoyed a diverse career in the arts including seven years at The Old Vic theatre working in London and New York and is currently studying to become a personal coach and therapeutic counsellor. She lives in London with her husband Simon and kindly took a little time out of her busy schedule to talk to Look Forward.

dealing with, though it's clearer now I've hit my thirties. My family never suggested that my RP should hold me back, for which I am really grateful, and to know that RP Fighting Blindness was there to support us and fight for a cure was incredibly comforting.

It’s really good of you to be helping RPFB in the way you are. What Rachael, thanks for talking to us. prompted you to get involved so Tell us a little bit about your RP and much more actively in this last year how it’s affected you and your or so? family?

In 2009, I was seconded to New Diagnosis was in my early teens, York and being in a strange city and an enormous shock for us made me realise how much I had all. The doctor made the diagnosis relied on the support of others to but was dismissive and my parents get around. So I reached out to find and I didn't really talk about the new support via Foundation impact it had on an emotional level Fighting Blindness. I had never met until recently. What's coming out anyone my age with RP before and now is a feeling of desperation, a Director there, Maria Costa, anger and hurt. At 14, the vision suggested we set up a coffee loss they were predicting would meeting for young professionals. happen seemed a long way off so it When I returned to London, I was difficult to know what we were wanted to see if this might work for 8

The RP Helpline 0845 123 2354

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:53 Page 9

CASE STUDY

We just need more people to come forward who are inspired by the mission who can dedicate a few hours a month to help organise events or social activities. If we can raise funds for a cause close to all of us at the same time, it's the perfect package. Just email us at rpyp@rpfightingblindness.org.uk Tell us a little bit about your personal life, your family and how you spend any free time you have?

RPFB. After a few successful social events, I felt confident enough to hold the first fundraiser at Dans Le Noir - it was hosted by Jeremy Vine and was such an astonishing experience. As we're at such an exciting time for research, to be involved in raising funds for what could be another major breakthrough feels massively energising.

RPYP is really important to us, but it’s been hard to get more people involved on the committee and organising events. What do you think we can do to address this?

I got married last year and I have RP to thank for our getting together; we were out on our first date at a theatre and the way out was very dark, and I decided to take his arm to steady myself - without explaining anything about RP. Later he admitted that he thought the gesture gave him confidence to suggest that we take it further!

My husband and I still enjoy going to the theatre, as well as the cinema, eating out and long walks around London. When I'm not working or socialising, I'm a voracious student and am studying for a BSc in Psychology and training as a coach and counsellor. I'm also training for my first half-marathon this year which I want to complete www.rpfightingblindness.org.uk

9

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:53 Page 10

CASE STUDY

while I still have usable vision - a great motivation.

You’ve had a varied and interesting career already; have you always had to plan work with RP in mind or have you been able to overcome any barriers you’ve faced?

It's only in the last year that I've had to talk about what RP means at work, and I've found people to be supportive. It felt very frightening to me as I feared rejection or being labelled a nuisance. I've found that if I'm just honest with people, they are more than happy to help. Not asking for any support I need is down to my own issues like pride or not wanting to accept the reality of the situation.

Now that my eyesight is deteriorating more rapidly, I am rethinking what's really important to me and what I want to achieve.

What is really my driving passion now? I realised that this was helping people reach their fullest potential and so I retrained as a personal coach at the end of last year - such a motivating career!

I am training as a counsellor and 10

The RP Helpline 0845 123 2354

may specialise in helping people with disabilities, including sight loss.

We’re in exciting times for RP research as you know, but a generally available cure is still some way off. How do you feel about the progress that’s being made?

I feel energised about it. When I think back to that bleak diagnosis, the doctor's attitude feels like a lifetime away. We simply can't be so pessimistic any more. It is a race against time for me personally, as my eyesight has deteriorated quite sharply in the last year, but given the rate of scientific progress, you can never say never, and that's a wonderful change to have taken place.

If there were no barriers, what would be your dream job?

To be a dancer on the West End stage; my parents took me to see musicals and I just loved them.

I really wished that I could be up there. I can dance quite well, but they’d have to keep the house lights on full beam if I wasn't to fall off stage!

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:53 Page 11

EVENTS

The RP Conference 2012 Saturday 23 June 2012 New Venue: Novotel London St Pancras 100-110 Euston Road London NW1 2AJ www.novotel.com The full programme for our main conference this year is available online and will be published in Look Forward in early June. This year’s event will be open from 9.00am allowing guests to enjoy meeting our exhibitors before our first session at 10.00am.

RP Awards 2012 Nominations are being sought again for the three RP Fighting Blindness awards; The John George Award for volunteering, RP Fundraiser of the year and the Lynda Cantor (Founder) Award for the future of the Charity.

Nominations can be made by any member, trustee, or staff member and must be for individuals.

Nominees must be aware that they have been nominated.

To take part this year booking is essential. Members and a partner or guide are welcome to the event free of charge, which includes lunch this year.

Non members are very welcome too, at a delegate rate of ÂŁ30 for the day.

The charity's formal AGM will take place at 3.30pm and will include the presentation of our Annual Report and Accounts.

To reserve your place please email michelle@ rpfightingblindness.org.uk or call her on 01280 821334.

Shortlisted nominees will be notified two weeks before the conference.

The awards will be presented at the RP Conference on Saturday 23 June.

The award winner will be chosen from the nominees by a small panel. The panel will include one member of staff, at least one member and one of our Trustees.

Please can we ask that you give some thought to making a nomination and do please pass this information to all of your RP www.rpfightingblindness.org.uk

11

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:53 Page 12

NEWS contacts. Nominations must be made by email to david@rpfightingblindness.org.uk no later than Friday 01 June.

Criteria for the Awards The John George Award for Volunteering will be made to the nominee who, in the view of the panel, has contributed most significantly to the charity in a voluntary role.

RP Fundraiser of the Year will be awarded to the individual nominee who, in the view of the panel, has

contributed most significantly to the charity in a fundraising role.

The Lynda Cantor Award for the Future of the Charity will be awarded to the nominee who, is judged to be most influencing or contributing to the future of RP Fighting Blindness. This award is limited to nominees aged under 40.

Finally, opportunities exist for you to sponsor additional awards, please contact Chief Executive David Head if you would like to discuss this.

We Need You! We are currently looking for volunteers to work as part of our helpline and befriending service.

Our helpliners volunteer to take helpline calls for four hours a week, though some flexibility is offered.

Befrienders are matched to people who need support and commit to calling them on a monthly basis for as long as is required.

Both positions need someone who has experience of RP (either themselves or a family member) and is confident in their ability to communicate with people who may need support. Full training will be given.

12

The RP Helpline 0845 123 2354

If you are interested in finding out more, please contact Carole Holmes MBE, our Voluntary Helpline Manager, on carolejholmes@googlemail.com

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:53 Page 13

NEWS

Outreach Update As many of you will already know the outreach project began in 2009 as a pilot. Due to the success of the project, outreach has now become a fundamental part of the work of the charity.

February • NBCS ‘Supporting Parents’ Day in Birmingham

The purpose of the outreach work is to reach many more people with RP by developing and promoting our services through collaborative working relationships with other organisations and professionals.

We want to ensure we reach those living with RP, and their families, who are not currently aware of us.

March • Disability Awareness Day in Worsley

We continue to have a presence at Sight Village exhibitions and other events around the country and with the recent introduction of our new Voluntary Local Representative (VLR) programme, we also hope to cover many more of the smaller regional events.

We cannot cover everything here but if you have any questions at all, please call our outreach officer Sue Drew on 01280 821334.

Some of the events we have participated in so far this year and forthcoming events include:

Find out about their worldleading research, meet patients, researchers, healthcare professionals and charities.

January • Launch of Sight Service’s RP Support Group in Gateshead • Moorfields Retinal Nursing Conference in London

• Ethnic Minorities Annual Health Fair in Cardiff • RP Support Group Sheffield Society for the Blind

• RP presentation to Winchester Sensory Support Team April • Moorfields Retina Awareness Day (details of event below) • Sight Village Glasgow and Edinburgh

On Saturday 21 April Moorfields Eye Hospital invite you to attend their free Retina Patient Day in London.

To learn more or book go online to www.brcophthalmology.org/ retinapatientday or contact Heather on 020 7608 4023 www.rpfightingblindness.org.uk

13

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:53 Page 14

EVENTS

Running Events Good luck to all our magnificent runners who will be taking part in the Virgin London Marathon on Sunday 22 April and in the BUPA London 10k on Sunday 27 May. Team RP Virgin London Marathon • Andrew Currie • Damian Eddyshaw • Alan Hilton • Lando Hilton • Rob James • Peter Maguire • Russell Sherr • Nick Vaughan Team BUPA London 10k • Fiona Copeland • Alpa Khakhria • Linda Young • Dan White • Emma Woodhead Places are still available for the BUPA 10k and also the Asics London 10k in July. For further details or to register please email michelle@rpfightingblindness.org.uk or call 01280 821334 14

The RP Helpline 0845 123 2354

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:54 Page 15

FUNDRAISING

Raffle Tickets Annual Prize Draw 2012 Please find enclosed with this edition of the magazine your prize draw tickets for 2012. We hope you will support our work this year by purchasing these, thank you very much.

1st Prize - £250 high street shopping vouchers 2nd Prize - £100 high street shopping vouchers

To order additional tickets, please email michelle@ rpfightingblindness.org.uk or call 01280 821334 Please gift aid any donations, gift aid means that for every £1 donated we receive an additional 25p.

By buying tickets you will be adding much needed money to our research funds, supporting research into RP. Thank you for your support and good luck.

3rd Prize - £50 high street shopping vouchers Plus other voucher prizes

Vouchers can be of the winner’s choice from any high street store.

Ticket stubs, any additional donations, cheques made payable to RP Fighting Blindness and any unsold tickets should be returned to RPFB, PO Box 350. Buckingham.

MK18 1GZ by 11 June 2012.

The draw will take place at the annual conference on 23 June 2012 at the Novotel London St Pancras. www.rpfightingblindness.org.uk

15

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:54 Page 16

BRANCHES Oxfordshire Local Group Peter Jackson We said a sad farewell to Margot and Derek Edmonds at our lunch in January. They are retiring after many years of devoted service to the charity in Oxfordshire. Margot was Chairman for 15 years and Derek Treasurer for 6. We were able to show our appreciation to them both with retirement gifts but they will be much missed, though we will do our best to keep in touch.

British Legion Club in Abingdon, starting at 11.30 am.

Our speaker will be Mr Colin Cure, Director of the Oxford Association for the Blind, and there will be a buffet lunch. If you have not been to our meetings before, do come along; you will receive and warm and friendly welcome.

Hampshire Steve Harris We were very pleased to send a total of £5,250 for research in 2011.

Very many thanks to everyone who worked so hard to help raise this, it is so important at this time of exciting research news.

We are holding our next meeting on Saturday 21 April at our usual venue, the St Lawrence Parish During Margot’s time as Chair the Oxford branch (now local group) has Room in Winchester. Coffee will be served from about 11, and after a raised around £45,000 for our short business session, we are medical research fund. We have looking forward to hearing from collected at most of the stores in the county, at the Kassam Stadium Julia Hawkins about her experience on the RP Iceland Trek last summer. home of Oxford United and a shopping mall in Oxford city centre. We will then welcome Dr Heather Oxford farewell lunch

The new Co-ordinator is Peter Jackson (01865 873246 or peterjackson25@hotmail.com) and our first meeting this year is on Saturday 21 April at the Royal 16

The RP Helpline 0845 123 2354

Thomson from the University of Southampton to tell us about the exciting research work and news there. It promises to be a lively and interesting get-together.

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:54 Page 17

BRANCHES We have been very fortunate to have been awarded a beneficiary day at Longstock Park Water Gardens near Stockbridge on Sunday 20 May. More details are in the separate item below.

plenty of visitors to the gardens on the day, and in particular it would be good to see many of you with families and friends enjoying the scenery. The gardens are open from 2pm to 5pm and are signposted from the A3057 Stockbridge to You can contact us on Andover road. There is ample 023 8047 6894, or hampshirebranch parking and refreshments will be @rpfightingblindness.org.uk. available at the tea rooms.

Steve Harris

We have offered to publicise the event, sell tickets, and provide some stewards. If you would like to know more or can help on the day please phone me on 023 8047 6894.

On a warm Sunday, what could be more pleasant than beautiful gardens, tea and a piece of cake?

Dorset Branch

Longstock Park Water Gardens

Set in the beautiful River Test valley in Hampshire are the Longstock Park Water Gardens. These delightful gardens are owned by the John Lewis Partnership, who allow them to be open to the public on certain Sundays for selected charities. RP Fighting Blindness is fortunate to have been awarded a date this year, and on 20 May we will benefit by receiving the entrance fees (approximately ÂŁ5).

We look forward to welcoming

Toby Hart As spring approaches we look forward to our meeting on Saturday 10 March; our guest speakers will be our Chief Executive David Head who will talk about the future for the charity, and Dave Palmer from Dorset Blind Association, who will outline the services they offer to members. Please come along armed with questions for them both!

Going forward we have a number of collections lined up during the summer. Please contact me on 01202 744344 if you can help, even if only for an hour. www.rpfightingblindness.org.uk

17

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:54 Page 18

BRANCHES Essex & Suffolk Branch Steve Carrington We had a good last quarter on the fundraising front last year thanks to another successful ‘Stride for Sight’ organised by Margaret and Ted Newson. It was a fantastic day and raised over £2,600 - thanks to Somerset both of you for another well organised event.

Tom Graham Joanne had another Disco Ball and raised over £550 too, well done Jo, and 2012 has started well with a kind donation of a fantastic £1,900 from Lexden Wood Golf Club. We owe a big thank you to everyone there who helped.

2011 was a good one from the fundraising point of view with £5,700 sent to the research fund.

Individual projects by Sharon Athersuch, Haydn Callow and Dennis Murray were big contributors to this total, on top of our regular income which is still from store collections. In particular, we are greatly indebted to Sainsbury’s and Morrison’s for their support.

Our members are widely spread over the county, so opportunities to meet have been limited. We have been trying to address this by With the Olympics just around the ensuring that each member is corner and on our own doorstep, phoned at least once every year. let’s see if we can get some This has been a rewarding fundraising ideas sorted out ready programme, and has had a good for the busy times ahead. Please let response. Our next branch meeting me know if you have any ideas that and AGM is provisionally set for you need help with.

Saturday 24 March in Taunton and Happy Fundraising everyone. we hope to see you there.

18

The RP Helpline 0845 123 2354

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:54 Page 19

MAJOR EVENT

Retina International Congress 2012 RP Fighting Blindness will be represented by Chief Executive David Booking is now open Head and Trustee Stephen Jones. We for the Retina hope too that many patients and families will join too, please let us International Congress which is to know if you intend to so we can arrange to meet up for a coffee! be held in Hamburg, Germany, on the weekend of 14 and 15 July. This Booking is through the event website major event, which takes place at www.tinyurl.com/ri2012 and if you every two years, brings together book before 27 April the fees are patients, scientists, and reduced by up to 20%. Flights to organisations from all over the Hamburg are readily available on world and is a unique opportunity Easyjet and other low cost airlines to meet and talk directly to them. from many UK airports.

“Gateway to Vision”

Show Your Support Wristband and Badges You can buy RP wristbands and pin badges from RP Fighting Blindness for £2 each. Sale proceeds go to help our work of course. Just as importantly, by demonstrating and advertising your support, you can really help us raise awareness.

If you can access the internet visit www.tinyurl.com/retpigshop or you can return the slip below to the office at “Freepost RP”



Name

 Wristbands

Address

 Pin badges

Amount enclosed £ www.rpfightingblindness.org.uk

19

88768 RP FB Spring Newsletter 3_Layout 1 23/02/2012 15:54 Page 20

FUNDRAISING

Stars of Our Community 2012 will be an even busier year with so many community events and challenges already in the diary.

Good luck to everyone and thank you.

For something different, for all the car enthusiasts in Nantwich, the Horseshoe Inn will be holding its annual car show on the 24th June.

The organisers have very kindly A special mention must go to chosen RPFB as their charity this Daniel Stanbury who lives in year. This fun day out will have live Northamptonshire. Dan has already music, stalls, food, real ale and a taken part in some challenging varied selection of classic and activities including a Coast 2 Coast veteran cars, commercials, buses walk in early 2011, and will be and motorcycles. All they ask is a joining the RP C2C this August. donation to the charity. For more Dan has Usher's and information check out their website was diagnosed in www.thehorseshoewillaston.org.uk December 2009. His Bike Ride: Join TEAM MOLLY for parents have always encouraged him to do RP Fighting Blindness Fri 04 May whatever he can and Team Molly will use dancing is his passion. a tried and tested Gaining a level 4 in route in Berkshire classical ballet and teaching for and Hampshire seven years has allowed him to which takes in grow and develop additional skills. mainly B roads, with In April 2011 Dan passed his Personal an optional ride Trainers Certificate. Limelight Fitness back the following day. The route is 36 miles and is is his next big project, making fitness accessible to everyone, not at http://tinyurl.com/mollywatt just those who can afford it.

Our thanks go to Molly's If you are taking on an RP challenge Dad Andy Watt for organising this challenge; you can get and would like information about more information or join healthy eating and training by contacting Andy on techniques contact Dan on danz1979@hotmail.com andrew@wattconsultancy.co.uk The RP Helpline 0845 123 2354

www.rpfightingblindness.org.uk