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Leeds Information Day

On Friday RP Fighting Blindness hosted an Information Day in Leeds. It was a fun day with more than 80 people coming together to listen to our speakers and network.

We were supported by Leeds Society for Deaf & Blind, a local charity which has been supporting people with sight and / or hearing impairments for 150 years. The charity kindly allowed us to use their function rooms to hold our event and provided volunteers to help make the day go smoothly. Jo Reveley, the organisation’s Chief Officer hosted the event and provided a presentation on the services offered locally.

I was joined by my colleagues Matthew Carr, Regional Service Manager for Central & Wales Region, and Clair Pudaruth, our Volunteer Coordinator both of whom were on hand to talk to people about the work of the charity and offer support as needed. It was lovely to welcome so many faces, both familiar and new, from the surrounding areas.

We were keen to keep a local focus for the day and were joined by two respected Consultant Ophthalmologists, Professor Martin McKibben and Dr Raj Mukherjee from St James Hospital in Leeds. They spoke about genetics and the increasing importance and availability of genetic testing and about current research that is taking place into therapies for various inherited retinal dystrophies. The audience was provided with an opportunity to put their own questions to our medics, which everyone enjoyed and took advantage of.

As well as hearing about the fantastic research that is taking place and the hope for the future, we also heard from a number of local sight loss charities about the support they offer locally and Leeds & Bradford rehabilitation teams spoke about mobility and cane training. We also heard two patients talk about their emotional and inspirational journeys of living with inherited sight loss.

It was an informative day, which everyone enjoyed. We have our next Information Day of the year coming up in Falkirk on Monday 10th September; anyone interested in attending this event should contact the office on 01280 821334 or email info@rpfightingblindness.org.uk

Denise Rawden
Regional Service Manager – North West & Ireland

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Sight Village Central

RP Fighting Blindness have again exhibited at Sight Village Central in Solihull.  The two day event organised by Queen Alexandra College is attended by hundreds of people from across the country looking to find the latest in equipment, advice and guidance on all things sight loss!

We had an excellent couple of days and had the privilege of speaking with many people with Inherited Retinal Dystrophies, teachers of the visually impaired, rehabilitation workers, eye health professionals and technology specialists, to raise awareness of the conditions we support and to make sure they have access to the latest information.

It was great to be able to catch up with our friends from OxSight and Orcam, as well as dozens of other exhibitors too.

We will be exhibiting at Sight Village Leeds on Wednesday 26th September and Sight Village South East in Kensington on the 6th and 7th November.  Further information on the Sight Village events can be found on the Queen Alexandra Website http://www.qac.ac.uk/exhibitions.htm

Matthew Carr
Regional Service Manager – North Wales and Midlands


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Fire Marshal Training

Yesterday I attended a training course with Fire Training Bucks & MK Ltd, to ensure that as one of our nominated Fire Marshals at head office, I am up to speed with all the latest regulation and best practice.

Held at the Safety Centre in Milton Keynes we covered different types of fires, extinguishers, evacuation and the legal requirements we have as an employer and events organiser. Particularly after the recent fire alert at the RPFB annual conference (a false alarm we’re pleased to report) fire safety is a top concern at head office.

It was a group training session and I attended with people from other local organisations and businesses. Our Senior Fundraising Manager Deborah Laing has already completed the training and I now join her in sharing responsibility for fire safety and evacuation at head office.

A huge thank you to our trainer Bob who was very knowledgeable and covered a huge amount!

Thomas O’Neill
Communications & PR Manager

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Charity Digital Conference, London

On Friday I attended the Charity Digital Conference, run by the Directory of Social Change, in Holloway, London.

The charity digital conference is a one-day, intensive conference which gives attendees the opportunity to hear from, put questions to, and network with charity digital leaders. It gives the chance for delegates to learn about digital best practice, data handling and discusses new tactics to employ to reach more people through the internet and social media.

We heard from leading charities from across the sector including Age UK, Comic Relief, Breast Cancer Care and Parkinson’s UK in addition to high profile digital and data organisations.

It was a brilliant opportunity to meet others from the sector and discuss the challenges other charities are facing in our increasingly digitised world, and the strategies they are using to overcome this.

A huge thank you to everyone at the Directory of Social Change for organising this event; I’m already looking forward to next year’s!

Thomas O’Neill
Communications & PR Manager

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RPFB Annual Conference 2018, London

This weekend just passed saw the RP Fighting Blindness annual conference take place in London. This year, as last, we were hosted by One America Square in Tower Hill.

We were joined by some leading scientific speakers, who presented on various strands of research and ongoing projects. We heard from Dr Mariya Moosajee, Dr Stephen Hicks, Dr Laura Brady, Prof Susan Downes and Prof John Marshall MBE. Sculptor and artist Victoria Claire was this year’s inspirational speaker, and Prof Robin Ali joined our RP Question Time panel in the afternoon.

We also brought back our popular workshop sessions for a second year – this year’s topics to choose from were Charles Bonnet Syndrome, smart glasses and genetic therapy.

The day ran smoothly, other than a fire alarm shortly before lunch! Luckily it was a false alarm and the day’s programme was back on track in no time.

We had almost 200 people in attendance, which makes our annual 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. Our exhibition was our largest ever and showcased some new technologies and stands we haven’t showcased before.

We’re delighted to report that we’ve had some great feedback 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.co.uk/r/rpfbconf2018. 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! Special thanks must go to event sponsors OxSight and Nightstar for their contribution.

Thomas O’Neill
Communications & PR Manager

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Hope to Seaview 2018

After years in the works, the inaugural ‘Hope to Seaview’ fundraising event took place on Sunday 10th June on the Isle of White and was a huge success! Organised by RP Fighting Blindness Trustee Colin McArthur and his wife Linda, 70 amazing people took part to raise money and awareness of inherited sight loss conditions, by either walking a 12-mile route along the coastal path or cycling 50 miles around the island. Everyone paid to enter and many also collected sponsorship or made donations, all of which will go towards our research fund.

I travelled down with my colleague Laura to support at the event and we were both incredibly impressed. It was a lovely sunny day and spirits were high as everyone gathered at the Salix café on Small Hope Beach in Shanklin first thing in the morning. A DJ provided the music and the walkers were waved off by the Town Crier and Jennie Lindon, star of films including Women in Love and Dr Who and the Daleks. The group took off on their walk, with several participants doing stints blindfolded with a guide. Mari, owner of the Salix, even walked the whole 12 miles blindfolded! There were plenty of stops along the way and chances for Laura and me to speak to everyone and offer our grateful thanks.

At the end of the route in Seaview, the Town Crier welcomed everybody back and each walker received a medal and certificate. Everyone was feeling proud of themselves and pleased to have taken part in such an enjoyable and well-organised event. A massive congratulations and thank you go to Colin and Linda, Mari and Mark from the Salix and everyone who worked hard to make this event happen. We look forward to finding out how much was raised and seeing whether this becomes an annual event!

Alice Capper
Fundraising Coordinator

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ELVis Vision Impairment Awareness Training

On Monday 21st May, I travelled to London with two of my fundraising colleagues, Leanne Thomas and Laura Conway, for vision impairment awareness training. Paula McGrath, who is soon to be joining RP Fighting Blindness as Head of Development, also took part in the session.

The training was delivered by Masuma Ali, CEO of East London Vision (ELVis), and Bhavini Makwana, ELVis Activities Coordinator and RPFB Ambassador. We learnt about terminology, communication, and tried on some specially adapted glasses that simulate common eye conditions, including cataracts, tunnel vision and macular degeneration. The session gave us a clearer understanding of how to communicate with people experiencing sight loss, how to guide a vision impaired person, and ways of adjusting services and facilities to cater for vision impaired people.

After listening carefully to Masuma and Bhavini describe different methods of guiding, we took to the streets of London in pairs; one wearing a blindfold and one acting as the guide, to practice this for ourselves. After tentatively manoeuvring the stairs and the lift in the building, we experienced walking down a busy London street and crossing on a zebra crossing. This really demonstrated how reliant a vision impaired person can be on their guide, and the importance of communicating effectively!

The day was extremely informative and well delivered, and I look forward to implementing what I have learnt at the Hope to Seaview fundraiser and RPFB Annual Conference in the upcoming weeks. Huge thanks to Masuma and Bhavini for their time and sharing their expert knowledge and advice with us.

Alice Capper
Fundraising Coordinator

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BioTrinity 2018

RP Fighting Blindness exhibited at BioTrinity 2018 which was held at the Hammersmith Novotel from the 23rd-25th April. I attended with Deborah, our Senior Fundraising Manager, and we learnt about many interesting projects in the life sciences field.

The organisers, OBN, are not-for-profit Membership organisation supporting and bringing together the life sciences industry, their corporate partners and investors. BioTrinity is an opportunity to network, partner and to learn from successful projects in this field, ultimately to help shape the future of healthcare for the better.

The theme for BioTrinity 2018 was ‘Next Generation Healthcare’ and this was certainly the topic of discussion whoever you talked to.

It was fascinating to hear of the incredible work that is being done to advance treatments for Alzheimer’s, diabetes and other chronic conditions. We also spoke to researchers and development managers for retinal therapeutic treatments and it was encouraging to hear that there are many organisations wanting to explore possibilities within the sight loss sector.

Both Deborah and I were involved in conversations that could hold potential for future partnerships, and they are looking forward to taking these relationships further.

Thank you to OBN who gifted us the exhibitor space.

Laura Conway
Partnerships & Philanthropy Manager

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GDPR Training Day

Monday the 23rd April saw the first ever RP Fighting Blindness GDPR training day. The training was held off site in Buckingham, and the full RP Fighting Blindness team attended.

GDPR will come into effect in the UK on 25 May 2018 replacing the current Data Protection Act and introducing new and different requirements for all sectors and organisations. Charities, alongside any private sector organisations, businesses, or public bodies, will have to follow these legal requirements when processing individuals’ personal data.

The training was delivered by Mark Burnett from ClearComm who has been working closely with the Fundraising Manager, Deborah Laing and me to ensure RP Fighting Blindness is working towards compliance. The training day covered all areas of GDPR compliance and was very well received by the team.

We are looking forward to implementing the changes in the coming months and I am sure you will be happy to know your data will be in safe hands with the RP Fighting Blindness team.

Vanessa Davis
Development Manager

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Virgin Money London Marathon

On Sunday 22nd April 2018, 19 runners took on one of the greatest events in the world: the Virgin Money London Marathon. The team did the charity proud, wearing their charity running vests as they took on this immense challenge, helping to spread the word about the work of RP Fighting Blindness whilst also raising thousands of pounds.

The week started with the Virgin Giving London Marathon Expo at the ExCel, London. RP Fighting Blindness joined other charities, sportswear providers and event promoters at the brilliant exhibition. Tens of thousands of people walked through the Expo each day, which gave a unique opportunity for us to reach more people who may want to take on another challenge event for RP Fighting Blindness. It also gave us the opportunity to talk to people about RP Fighting Blindness. In order to engage people with the work of the charity, the fundraising team came up with a sensory game to play. It involved people putting their hand into a box and identifying the items inside without being able to see them. The items included a shell, balloon, drum, a £10 note, some peas and some lychees! The participants then wrote down their answers on a form which was then entered into a prize draw to win a Jasmine Indian afternoon tea at the Taj hotel, London, and a sports massage after the marathon. Thank you so much to the Taj for donating the afternoon tea, and to everyone who took part in the game.

As all the marathon runners need to attend the Expo in order to collect their race packs, we were also able to meet all of Team RP before race day, thank them in person and wish them the best of luck.

When Sunday came around there was a fantastic atmosphere in the air for the hottest marathon on record! Everyone was looking forward to a brilliant day. We arrived at the Taj hotel to set up our reception ready for when the runners arrived. Waiting for them was a warm welcome, use of the hotel showers, refreshments and many congratulations! As the room filled up with our runners, their friends and family, it was so good to see people discussing the run, their fundraising and what the charity means to them.

A big thank you needs to go to Sally from Rodrigues Relaxation for volunteering her massage services on the day. The runners really appreciated them and said it really made a difference! We appreciate you giving up your time to support them.

So far, Team RP have raised over £25,000 for RP Fighting Blindness, with many of them continuing their fundraising with events such as Balls, cake sales, quiz nights and more. The dedication every single runner has shown has been simply awe inspiring. Thank you so much to the whole of Team RP, and congratulations again for taking part in such an extraordinary challenge!

Emily Webb
Fundraising Events Manager

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