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RP Fighting Blindness Annual Conference 2017

30 June 2017

Last weekend saw the RP Fighting Blindness annual conference take in place in London. The event was a great success and we welcomed almost 200 people to One America Square near Tower Hill.

In a change to past few years, we chose a new venue and refreshed the conference format, incorporating workshops. We also introduced a more in depth written programme, including speaker biographies, AGM information and other useful communications. We launched an app this year too, so delegates could look up information about the event on the go, and simplified lunch. All these changes were implemented following careful consideration of the 2016 feedback.

Our Chair of the Board, Don Grocott, acted as host for the day and kept the pace up! We were fortunate enough to attract some of the county’s leading scientific researchers as speakers, with Prof Mike Cheetham of UCL presenting on small molecule therapies, Prof Tara Moore of Ulster University presenting on correcting genetic mistakes, and Prof Susie Downes of Oxford Eye Hospital speaking about genetic testing.

Long serving medical trustee Prof John Marshall MBE presented the John Marshall Award for RP Science to Prof Mike Cheetham; a fitting tribute to a man who has done much for both the charity and RP research. Mike accepted the award on behalf of the team he worked with on the published paper Identification and Correction of Mechanisms Underlying Inherited Blindness in Human iPSC-Derived Optic Cups.

Our Chief Executive Tina Houlihan addressed the audience, and showed a short video about the charity’s work which featured a broad range of people involved with our work, from trustees and staff, to fundraisers and Helpliners. You can view this video below.

The RP Awards followed Tina’s presentation, and our Deputy Chief Executive Emma Hughes announced the nominees and winners.

The Roger Green Award for Special Contribution to the Charity was won by Colin and Linda McArthur, for Colin’s work as a trustee and his wife Linda’s constant support for the charity. The pair are well known within the organisation and the two of them have undertaken a staggering amount of fundraising and awareness work on our behalf.

The John George Award for Volunteering was this year won by Peter Long, thanks to his adventurous spirit as an avid RPFB trekker! Peter has participated in the treks to Iceland, the Coast to Coast, the Sahara and the Three Peaks. He acted as an assistant leader during the Sahara Trek, and is an active member of the East of Scotland Local Group.

The 2017 winner of the RP Fundraiser of the Year Award was Emma Denton. Emma is a familiar face at RP Fighting Blindness fundraisers. A committed supporter of our work, she continues to support the charity through many channels including sporting challenges and music events. This year, to celebrate turning 40, Emma is running 40 races consisting of ten marathons, ten Half-Marathons, ten 10k's and ten 5k's or family races. Emma is great at getting her friends and family involved and is a real inspiration to all community fundraisers!

The Lynda Cantor Award, for the future of the Charity was won by James Clarke. James organised a talent show to fundraise for us, the legendary Worksop’s Got Talent! The event took place in November 2016 and saw over 600 people attend to watch ten fantastic acts, complete with a celebrity judging panel. The event raised over £5,000 for the charity, and has now become an annual fundraiser, with the next show scheduled for 10th November 2017 with the target of raising £10,000! The talent show was a great success, and wouldn’t have been possible without his dedication and drive.

This year we changed the way we serve lunch - instead of the usual hot buffet, we decided to trial packed lunch bags which were well received. We did this as some delegates from last year said they’d like a more convenient way to collect and consume their lunch and we’re delighted to have found a solution to this. Delegates were free to browse the exhibition stands during the break, and mingle and chat with other attendees and speakers.

Our inspirational speaker presented after lunch - this year’s was Steve Bate MBE, athlete, adventurer and professional speaker with RP. In 2013 Steve became the first visually impaired climber to solo El Capitan, a shear 3000ft rock face in the Yosemite Valley, California. He climbed the face three times in total, twice with British climbing legend Andy Kirkpatrick. Following his success in America he headed in a new direction and set himself the goal of making the Rio 2016 Paralympic Games as a visually impaired cyclist. In September 2013 just three months after returning from America he was a guest with the British Cycling Development Programme, then in the following January he was asked to join the team and was paired with Adam Duggleby. Together the two quickly proved their worth and in a remarkably short time the two became double Paralympic champions in Rio. Steve achieving his dream of becoming a Paralympian and returning home with two gold medals, one bronze and a world record in the four kilometre individual pursuit. His talk about his journey was truly inspirational, and he proved a great hit with this year’s delegates.

We held our workshop sessions in the afternoon, and attendees had a choice of five one hour sessions. These consisted of Genetic Management, Retinal Implants, Benefits, RNIB Connect & Online Today, and Employment.

The Genetic Management workshop was run by Monica Armengol, Genetic Counsellor at Moorfields Eye Hospital. This workshop covered the importance of genetic management and how genetic testing is performed.

The Retinal Implant workshop was sponsored and hosted by Second Sight. This was run by Prof Paulo Stanga, Consultant Ophthalmologist and Vitreo-retinal surgeon at Manchester Royal Eye Hospital. He was joined by Andy Fisher, Visual Impairment trainer and rehabilitation consultant. Prof Stanga presented on the forthcoming NHS evaluation of the Argus II retinal implant, and what this means for the RP community. Andy Fisher discussed the impact of retinal implants on day to day life, and mobility.

The benefits workshop discussed and provided information about some of the benefits available to visually impaired people. This was run by Khadeja Ali who volunteers on the RPFB Helpline and for Citizens Advice Bureaux.

The RNIB Connect & Online Today workshop was facilitated by Ashleigh Venables, RNIB Connect Community Facilitator, and Andrew Palmer, Assistive Technology Coordinator. RNIB Connect aims to bring people together around the issues of sight loss and make positive contributions to improving the world in which we all live. This workshop introduced attendees to some of the blind and partially sighted people taking a lead in the community. Online Today is a scheme helping people with sensory loss to get online, as the internet is transforming the way we live our lives. Online Today can help in many ways, offering support across the UK. From home visits by our volunteers to locally run group sessions, training and one-to-one support. Andrew Palmer from RNIB’s Online Today team gave you an overview of what is on offer from this project.

Alexa Sage, Development and Innovation Manager at Visionary ran the employment workshop, which explored the current issues in the employment landscape for people with sight loss, recruiters and employers. Alexa ran through a range of techniques that the people she has worked with over the years have used successfully to navigate recruitment, retention and progression in work through sight loss.

The ever popular RP Question Time was one of the final sessions of the day, with the morning’s medical speakers joining Prof John Marshall MBE on the stage to take questions from our delegates. A broad range of topics were covered, from the effect of Brexit on British and European research, to inheritance patterns and the RP Genome Project’s relationship with the 100,000 Genome Project.

Our Chair Don Grocott rounded off the conference by addressing the audience, thanking them for attending and of course the day’s speakers. The formal AGM followed the conference, where resolutions were passed to adopt the Annual Report & Accounts for 2016, reappoint our auditors, and re-elect trustees who were due for re-election. If you’d like to learn more, you can request a copy of the minutes of the AGM by contacting head office.

We hope everyone who attended enjoyed the day, and we would like to thank the many speakers and workshop facilitators who so generously gave their time for making the day possible. Thanks also must go to Second Sight for their sponsorship of the retinal implant workshop, and to the volunteer guides from Guide Dogs who helped many of our delegates.

The next RP Fighting Blindness annual conference will be held in June 2018. The exact date will be announced early next year.

We will be uploading the conference recordings to the website shortly. Please note only the Genetic Management Workshop was recorded on the day. If you attended this year’s conference and have some feedback you’d like to share with us, please follow the link at the foot of the page where you can fill in a short survey and write notes about your thoughts on the event.

Should you have queries about any RP Fighting Blindness event, please contact head office on 01280 821334 or email

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