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Para Sports Fest

On Sunday 1st October I headed up to Loughborough for a special event organised by Dan Powell, Paralympic athlete, entrepreneur and RPFB Challenge Event Champion!

Dan has his own company called Ability Training, which delivers workshops to gyms, personal trainers and sports coaches on how to train vision impaired people. The company is all about inclusivity, and the Para Sports Fest highlighted that perfectly.

The day involved groups of children of varying ages and abilities trying out different Para Sports, including goal ball, para football, athletics and Judo. The groups each had half an hour to try out the different sports, each being lead by industry experts and Paralympians. It was fantastic to see the children getting stuck in and growing in confidence throughout the sessions. The blindfolds didn’t seem to faze them at all and every single child there clearly enjoyed themselves.

Double Paralympic gold medallist Libby Clegg was running the athletics session along with her guide runner Chris, teaching the children all about guide running, and even running with some of the children herself. In another section of the hall, Dan helped to teach the Judo, giving some incredible demonstrations to the mesmerised kids!

In total there were over 100 children plus their parents there that day and it was fantastic to be able to speak to a lot of them about RP Fighting Blindness, and get a few donations too! As well as our collecting tins, Dan organised a raffle, and a portion of the entry fees will also be donated to RP Fighting Blindness.

Thank you to Dan for putting on this fantastic event, inviting us along and raising money too.

Emily Webb
Fundraising Events Manager

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Vision Impairment Awareness Training

Earlier this week the staff at RP Fighting Blindness undertook Vision Impairment Awareness Training, facilitated by East London Vision (ELVis). All staff undergo sighted guide training while working for the organisation, and we ensure regular refreshers on this, but the course we undertook on Monday was wider than just guiding.

We had introductions and refreshers on a range of topics including terminology, communication, giving directions and descriptions to those with sight loss, and learnt about the effects of a range of common eye conditions using simulation glasses. The course consisted of discussion groups, practical exercises and presentations about these areas.

Towards the end of the session, we were split into pairs, with one acting as a guide, and the other acting as a vision impaired person using a blindfold. We had to put our training into action and guide our colleagues around Buckingham town taking a pre-chosen route selected by the course leaders. This route incorporated roads, pavements, stairs, steps and slopes to give us a broad an understanding of how different terrains need to be approached as a visually impaired person.

A big thank you to ELVis for their time and expertise; we all came away feel better informed and more skilled at guiding, as well as having a better understanding of a range of sight loss conditions.

Thomas O’Neill
Communications & PR Manager

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Sight Village Manchester

Yesterday I attended Sight Village in Manchester representing RP Fighting Blindness, with our interim Head of Services Antony Moore. The event was held at the Marriott Renaissance Hotel and welcomed many delegates who visited the 50 or so companies, organisations and charities which were present.

We were delighted to speak with so many health and social care professionals, as well as teachers and other educators. We met some members of our organisation, and spoke with people recently diagnosed with RP but who hadn’t yet come to us for support or information.

Sight Village is a valuable opportunity to meet and catch up with sector partners and we were pleased to catch up some familiar and new faces. We’re excited to be working more closely than ever before with regional and local organisations as our new regional model develops and Sight Village Manchester was a great way to meet some local societies and service providers.

We look forward to meeting our sector colleagues, members of our community and sight loss professionals at the next Sight Village which is in Kensington in November.

Thomas O’Neill
Communications & PR Manager

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Oxford Local Group Anniversary Lunch

I was delighted to have been invited to the Oxford Local Group’s 21st anniversary celebrations in early September.

Our Local Group Network exists to bring people together in their area for socialisation, support and friendship. Some groups choose to fundraise too and share awareness of our cause. The Oxford Local Group does all these things, and a very proud and productive history they have too!

The celebration was held at a curry house, the Sun Koshi in Didcot, and we were all very well looked after. Chris Turner, the Local Group Leader, payed tribute to the many people who’d helped shape the group into such a success, and its past and future were toasted.

Everyone at RP Fighting Blindness wishes the Oxford Local Group the very best for the future, and we look forward to hearing more about what they’re getting up to soon!

Thomas O’Neill
Communications & PR Manager

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Guide Dogs Charity Presentation

Last week I was invited by the Reading Guide Dog team to talk about RP and the work of RP Fighting Blindness.
Thankfully the weather and traffic were kind and I was met on Thursday morning by a lovely team of people and lots of wonderful guide dogs in training.

These types of events are always beneficial, as well as enabling us to collaborate and network with our colleagues from other sight loss organisations they allow us to provide the latest information and raise awareness of our services to the most important people of all, those people affected by RP and other genetic retinal dystrophies.

Over 30 people attended the meeting and I provided an informal presentation and Q&A session about the history and work of RPFB. Topics covered included a definition of RP, inheritance patterns, genetics, research and all things RP related. Networking really is essential to the work of the charity.

Every time we get out and talk about what we do, about how important the charity is for those with RP and the essential information and support services we provide, we are raising our profile, gaining influence and reaching out to people who may need our help via our sight loss sector colleagues.

Denise Rawden
Volunteer Development Manager

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West Highland Way Trek

On Sunday 20th August a group of 11 people set off from Milngavie on the famous West Highland Way trek. The group were a mixture of abilities, but it soon became clear that they would look after each other and work as a team to complete this immense challenge.

The group was made up of Peter Long as trek leader, Joe Churcher, Teresa Waldron, Faye Maguire, Richard Boggie, Jane Robson, Richard Clark, Ted Dwyer, Celia Dawson, Alan Chamley, and Patrick Moran. They all hit it off from the start, and the banter and camaraderie was instantaneous!

It was a challenging week trekking through the Scottish Highlands through midge infested landscapes and torrential rain, but the bonds that formed within the group ensured that despite being wet, there was always someone to put a smile on your face. The weather wasn’t all bad, and the team were treated to stunning views each day. On the last day especially they were awed by a fantastically clear view of Ben Nevis.

I walked the last part of the trek with them through Fort William high street and for me that was the highlight of the whole week. Being a part of that special moment when they crossed the finish line is a memory I will cherish. The pure emotion that they felt after completing such a challenging journey was something really special.

To celebrate their amazing achievement we all went for a delicious meal at the Alexandra Hotel, and it was brilliant to hear people reflect on their highlights. Richard Boggie performed a wonderful poem to say thank you to Peter for his brilliant leadership and to me for supporting them. Peter then said a few words, highlighting the importance of fundraising for research and sharing his personal story of why he supports RP Fighting Blindness. Finally it was my turn. I handed out certificates and a medal to each person and reinforced how grateful I was to each of them for both fundraising and for being such an inspirational group to work with.

Thank you to all of the trekkers for raising such vital funds for the charity and for taking on this incredible challenge. Special thanks go to Peter for leading the group and for all the help he gave beforehand with the planning. Thank you also to Teresa for patching up injuries as First Aider, and to Joe who gave Peter a lot of support too.

Peter has kindly agreed to write his own account of the trek… watch this space!

Emily Webb
Fundraising Events Manager

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First Aid Training

Earlier this month Emily Purchase, Fundraising Events Manager, and I attended an emergency first aid course run by the British Red Cross in Milton Keynes. This one day course was to update our skills and refresh our first aid training. Emily is currently accompanying our intrepid West Highland Way trekkers in Scotland and wanted to be prepared for any eventuality! I’m our office first aider and attend many external events and wanted to ensure I was fully up to date with the latest emergency care theory.

Thanks must go to our brilliant trainer Helen, who guided us through CPR, burns, lacerations, bandaging and even the use of defibrillators! The group session consisted of a range of office and manual workers from many different organisations, so topics were broad and wide ranging.

Both of us feel so much more prepared in the event of an emergency and are already looking forward to our next course!

Thomas O’Neill
Communications & PR Manager

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Helpline Volunteer Training Weekend

Where did the last year go? It’s been a busy time at RP Fighting Blindness and last weekend saw our wonderful helpline volunteers, both old and new come back together again for our annual Helpline Volunteer Training Weekend. We returned to Kents Hill Training & Conference Centre in Milton Keynes for our third year running and once again we were very well looked after.

The weekend is an important part of the RPFB calendar as it provides an opportunity to learn new skills, review best practices and to learn detailed information from our guest speakers. This year we heard from Judith Potts from Esme’s Umbrella about Charles Bonnet Syndrome, something that many people living with inherited retinal dystrophy can be susceptible to. Fiona Powell joined us from RNIB Eye Health Team to talk about the many conditions that come under our RPFB umbrella such as rod-cone and cone–rod dystrophies; Choroideremia; Stargardts and many more.

On Saturday, we were jointed by Dr Stephen Hicks to talk about the latest update on his Smart Glasses technology, it was fascinating to see how far the technology has come in a short time. We were also joined over the weekend by Tina Houlihan, RPFB’s CEO who took the opportunity to update the volunteers about the latest developments at the charity as well as to chat to the team about their own views and experiences. With 19 volunteers and two guide dogs, it was lovely to have Deborah Laing, our Senior Fundraising Manager and Clair Pudaruth, our Office Administrator joined the team to help over the weekend as well as Thomas O’Neill, our Communications & PR Manager who was supporting at his fifth training weekend! It was a wonderful opportunity for the head office staff to mix and learn from our volunteers.

The weekend is also an important opportunity for the team to get together and support each other; a great deal of learning happens over diner and a glass of wine, when the team get chance to share experiences and socialise. The weekend was a great success and I’d like to say a big thank you to all of our Helpline volunteers; without their hard work and dedication, we would be unable to offer this unique and valuable service.

Denise Rawden
Volunteer Development Manager

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Sight Village, Birmingham

Last week, Vanessa Davis and I attended the annual QAC Birmingham Sight Village event. As last year, it was held at The New Bingley Hall, one of the largest venues in the West Midlands.

Being new to the RP Fighting Blindness team, I had no idea what to expect, but I was pleasantly surprised; I met lots of wonderful people, including visually impaired people and their families, manufactures of low vision aids and technologies, other charity representatives, sight loss professionals and other business people. There were also helpful QAC guides on hand to help show the visually impaired guests around the venue. It was all very well organised.

We were asked many different questions, from what we do as a charity to the research we fund. We had lots of literature to hand out, such as flyers, DVDs, magazines and posters, along with our simulation specs, which always seem to pique people’s interest! We spoke with many different health and care professionals, many of whom had connections in some way to people with RP and wanted our resources.

While at Sight Village, I decided to have a wander around and find out a little more in relation to assisted technology for the visually impaired. I was amazed at some of the advances which have been made in recent years with regards to accessible technology and look forward to learning more about this area.

I felt truly humbled and honoured to have met such wonderful people, and to have learnt of their own personal experiences of living with visual impairment. Our main focus of attending Sight Village was to make people aware of who we were, what we did, and that we are here for them, giving them the support that they need.

I hope to be at future Sight Village events, so please pop along and say hello, I’d love to meet you!

Leanne Thomas
Fundraising Assistant

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RP Fighting Blindness Annual Conference, London

Last weekend was the RP Fighting Blindness annual conference in London. This year we moved the conference from its old home of the Pullman Hotel in Euston to a new venue; One America Square in Tower Hill. We undertook this move after consecutive five years at the Pullman as we implemented a new conference format, including interactive workshops.

We were joined by some leading scientific speakers, who presented on various strands of research and ongoing projects. We welcomed Prof Mike Cheetham, Prof Susan Downes and Prof Tara Moore, as well as Prof John Marshall, our medical trustee. Gold medallist Paralympian Steve Bate, who represented Team GB in the London 2012 and has RP was this year’s inspirational speaker. We ran five different workshops, which consisted of Benefits, Retinal Implant Technology, Genetic Management and Employment; each of these specialist sessions were run by experts in their fields.

We had almost 200 people attend, which makes our conference the biggest gathering of the RP community in the country. We were delighted to welcome many new faces to this year’s event, as well as lots of familiar ones. This year’s RP Awards honoured some amazing volunteers who have gone that extra mile, and the exhibition showcased some new technologies and stands we haven’t had before.

We took on board feedback from last year’s event, and changed the lunch options, the RP Awards presentations and the medical question time session. We’re delighted to report that we’ve had some great notes back from this year’s attendees, and are already planning ways to improve next year’s conference. If you attended and would like to make any comments, please fill in our online feedback form which can be found here: https://www.surveymonkey.com/r/rpfbannualconference17. Alternatively you can email me on tom@rpfightingblindness.org.uk

We’d like to thank everyone who attended, and of course a big thank you must go to all the speakers and workshop facilitators who generously gave their time and helped make the day possible!

Thomas O’Neill
Communications & PR Manager

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