Surfing with sight loss – fun and freedom
By Victoria Claire, Retina UK Ambassador Surfing was always something that appealed to me – I loved the idea of it, the culture, the fashion – when I was younger I often wore surf-style clothing. But when I was diagnosed with retinitis pigmentosa (RP) at the age of 19, I accepted that it was something …
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Victor completes the Munich Marathon!
On 14th October, Victor took on the Munich Marathon for the Retina UK research fund. He completed the marathon in 4 hours 50 minutes, a fantastic achievement, especially as he only started running a year ago. He has described the freedom he felt by starting to run with a guide: “You cannot imagine the sensation …
RP Fighting Blindness rebrands to Retina UK
RP Fighting Blindness, the leading UK charity dedicated solely to working for people affected by inherited retinal conditions, has today rebranded to Retina UK. As well as a new name and visual identity, it has developed a new website www.RetinaUK.org.uk Retina UK works for people affected by a range of inherited retinal dystrophies including retinitis …
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Widespread errors in “proofreading” cause inherited blindness
Mistakes in “proofreading” the genetic code of retinal cells is the cause of a form of inherited blindness, retinitis pigmentosa (RP) caused by mutations in splicing factors. This new understanding of the disease process, published today in Nature Communications, is leading to the development of a gene therapy for RP caused by splicing factor defects. …
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Inspirational artist becomes RP Fighting Blindness Ambassador
Victoria Claire, a professional artist in contemporary sculpture for more than 25 years, will be working with the charity to show that it is possible to lead a limitless life despite a diagnosis of inherited sight loss. Victoria Claire is the third Ambassador to join RP Fighting Blindness and will be bringing her inspirational approach …
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Glittering London Charity Dinner for childhood sight loss research
Eyes on the Future Gala Dinner to raise funds for treatment of Leber congenital amaurosis, a severe degenerative eye condition. The parents of a child affected by Leber congenital amaurosis (LCA), a severe degenerative sight loss condition, are organising a high profile gala dinner in London to raise funds for research into the disease. LCA …
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Working Age Group Project Survey
You may be familiar with our ongoing Working Age Group Project, which aims to provide future employment services to working age people who are living with degenerative sight loss. This project is being led by RP Fighting Blindness, in partnership with sight loss charities Thomas Pocklington Trust, Visionary and RNIB. In order to develop these …
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 …
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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 …
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 …
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, …
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 …