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Retina UK

Retina UK

By Retina UK
Retina UK supports people affected by inherited progressive sight loss and invests in medical research to ensure that people an lead a fulfilling life, now and in the future.
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The Big Give Christmas Challenge 2021
Donate now and your gift will be doubled! The Big Give Christmas Challenge is underway. Make your donation to medical research as soon as possible and it will be DOUBLED at no additional cost to you: https://donate.thebiggive.org.uk/campaign/a056900001txvAyAAI Now is such an exciting time for sight loss research - but we can't take our foot off the pedal now, and the pioneering projects we fund are only made possible by your donations. Need help to make your donation, or would like more information? Contact Deborah on 07841 004564 or email fundraising@RetinaUK.org.uk. Spread the word amongst friends and family to help us raise as much money as possible – we’re aiming for £50,000 this year! Thank you for your support - together we can drive progress towards new and effective treatments for inherited sight loss.
04:58
November 30, 2021
Look Forward - Winter 2021 - Issue 175
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2021 (Issue 175). You can download a copy in PDF and Word format on the Retina UK website: www.RetinaUK.org.uk/publications.
01:01:55
November 19, 2021
Webinar: Michael Gilhooley, Optogenetics
This content was recorded during a Retina UK webinar on Wednesday 27 October 2021. You can watch the full version, which includes slides, on our YouTube channel: https://youtu.be/1DYvRgjwd8A Michael Gilhooley is a clinical lecturer in the department of Genetics, Institute of Ophthalmology University College London and Moorfields Eye Hospital. His research interests include the development of novel therapies for inherited retinal degenerations (optogenetics) and inherited optic neuropathies.  This session introduced the technique of optogenetics and its potential for development into a treatment for IRDs. Optogenetics is the process of expressing light sensitive proteins in cells, such as these surviving cells in the retina, to allow them to react to light independently. It has recently been used for the first time to return some vision to a patient with IRD in Paris as reported in the BBC News.
58:56
November 1, 2021
E-Newsletter October 2021
A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/.
05:31
October 15, 2021
Information evening (online): Wales - Wednesday 14 October 2021
Speakers include: Professor Marcela Votruba, Professor and Hon. Consultant in Ophthalmology Dr Nicola Tavener, Genetic Counsellor Dr Paul Cornes Glenn Tookey, CEO, Sight and Sound Presentations will cover: Genetic primer- patterns of inheritance and genetic counselling- especially relevant to inherited retinal dystrophies (IRD) Summary of IRD diseases, genes & overview of current IRD gene therapy and treatment trials Clinical Outcomes Group- How are we going to find new treatments for rare diseases such as IRD? Accessible Technology from Sight and Sound The focus of our Wales information evening is specific to that part of the United Kingdom. Please remember that the process for referrals etc. may not be exactly the same in your home region.
01:52:16
October 14, 2021
Information evening (online), Northern Ireland - Wednesday 29 September 2021
This online information evening was recorded on Wednesday 29 September 2021. The speakers do reference slides. They are available on the YouTube recording of this webinar if required: https://youtu.be/7KptxsuXdUU.  Speakers include:  Miss Julie Silvestri, Clinical Director for Ophthalmic Services at the Belfast Health & Social Care Trust Miss Eibhlin McLoone, Paediatric Ophthalmologist  Dr Alex Yeong SpR Ophthalmology  Dr Shane McKee, Consultant in Genetic Medicine Miss Claire Kirk, Genetic Counsellor, Ophthalmic Services at the Belfast Health & Social Care Trust  Miss Laura Cushley, PhD Student, QUB   Presentations covered:   Updates on genotyping in inherited retinal disorders in both the adult and paediatric populations Inheritance patterns  Unlock Genetics Navigating towns and cities with sight loss
01:53:23
October 1, 2021
Webinar: DNA and RNA base editing tools for Stargardt’s Disease
This webinar features Elena Piotter and was recorded on Tuesday 24 August 2021. Elena does reference slides in her presentation. They are available on the YouTube recording of this webinar if required: https://youtu.be/lQ6SEK-wLZs.. Elena Piotter, a PhD student working in Robert MacLaren's group in the Nuffield Laboratory of Ophthalmology at the University of Oxford, is currently researching DNA and RNA base editing tools aiming to correct pathogenic mutations in ABCA4. Her focuses on gene therapy, CRISPR technology including DNA and RNA base editing, and why this is relevant for Stargardt disease. She is excited to have this research funded by Retina UK and recently ran an UltraChallenge 25km to raise money and show support for Retina UK. There are a number of webinars and online information evenings being held by Retina UK in the autumn of 2021. For more information, visit: https://retinauk.org.uk/info-events.
48:53
September 24, 2021
Webinar: Inflammation and retinal degeneration in retinitis pigmentosa: Can lessons learned in the lab help us identify treatments in the clinic?
This webinar features Roly Megaw and was recorded on Thursday 23 September 2021. Roly does reference slides in his presentation but the content is easy to follow without the slides. Roly Megaw is a clinician scientist. He is a Wellcome Trust funded clinical lecturer at the MRC Human Genetics Unit at the University of Edinburgh and a consultant ophthalmologist in NHS Lothian. Roly undertook his PhD with Charles ffrench-Constant at the Scottish Centre for Regenerative medicine, using induced pluripotent stem cells to model x-linked retinitis pigmentosa, prior to undertaking his clinical fellowship with Graeme Black in Manchester. The webinar is also available on the Retina UK YouTube channel where it includes the slides: https://youtu.be/msbH6QseSBk. There are a number of webinars and online information evenings being held by Retina UK in the autumn of 2021. For more information, visit: https://retinauk.org.uk/info-events. 
01:02:13
September 24, 2021
E-Newsletter September 2021
A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/.
09:03
September 15, 2021
E-Newsletter August 2021
A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/.
05:14
August 16, 2021
The difference we made in 2020
Retina UK Impact Report illustrating the difference we made in 2020.
22:26
August 11, 2021
E-Newsletter July 2021
A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/.
06:37
July 26, 2021
In conversation with Steve Bate MBE
Gold medal winning paralympian and Retina UK Ambassador Steve Bate MBE talks to Head of Fundraising, Deborah Laing in the run up to the 2020 Paralympics in Tokyo. 
21:04
July 15, 2021
Look Forward - Summer 2021 - Issue 174
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2021 (Issue 174). You can download a copy in PDF and Word format on the Retina UK website: www.RetinaUK.org.uk/publications.
52:34
June 25, 2021
Unlock Genetics - a recording of the content on our website
This content has been taken from the Unlock Genetics website: www.RetinaUK.org.uk/genetics. High quality information on genetic testing and counselling for families affected by inherited sight loss is now available in one place thanks to the launch of an innovative new website, Unlock Genetics (www.RetinaUK.org.uk/genetics). The site aims to increase the level of awareness of genetic testing and genetic counselling amongst people living with inherited sight loss conditions, empowering them to make fully informed decisions about their lives, healthcare and family planning. It provides clear, trustworthy and balanced information and has been developed with significant input from experts in the field and also those who live with inherited sight loss.
01:44:19
June 22, 2021
E-Newsletter May 2021
A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/.
06:34
May 28, 2021
An overview of current research into inherited sight loss
Retina UK Research Development Manager gives a broad update on what's happening in the research world. This talk was originally made in the latter part of 2020 to the Retina UK Local Peer Support Groups.
18:52
May 19, 2021
E-Newsletter April 2021
A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/. 
06:38
April 23, 2021
Unlock Genetics
The different tracks within this episode feature Retina UK Research Development Manager Kate Arkell in conversation with Georgina Hall, Consultant Genetic Counsellor at the Manchester Centre for Genomic Studies about why you might consider getting a genetic test. It is followed by Retina UK Information and Support Manager Denise, who speaks to Georgina about the practicalities of getting a genetic test. Finally Bhavini and Martin share their very different experiences of genetic testing and counselling. Find out more by visiting our website: www.RetinaUK.org.uk/genetics.
39:07
April 21, 2021
Retina UK Professionals' Conference - April 2021
The Conference took place on Friday 16 April 2021. It was held online due to restrictions currently in place. The programme is available to download as follows: PDF format: https://retinauk.org.uk/wp-content/uploads/2021/04/Professionals-Conf-2021-FINAL-2.pdf Word format: https://retinauk.org.uk/wp-content/uploads/2021/04/Retina-UK-Professionals-Conference2021.docx
03:50:22
April 21, 2021
Retina UK Annual Conference - April 2021
The Conference took place on Saturday 17 April 2021. It was held online due to restrictions currently in place. The programme is available to download as follows: Programme in PDF format: https://retinauk.org.uk/wp-content/uploads/2021/04/Retina-UK-annual-conf-prog_2021-FINAL-2.pdf Programme in Word format: https://retinauk.org.uk/wp-content/uploads/2021/04/Retina-UK-Annual-Conference2021.docx The programme is also available in audio format on this channel.
04:07:25
April 21, 2021
Retina UK Annual Conference & AGM 2021 - Programme
Annual Conference - 17 April 2021, starting at 9.30am with the AGM, followed by the Conference at 10.00am. More information is available on the Retina UK website at www.RetinaUK.org.uk/annual-conference.
20:17
April 15, 2021
E-Newsletter March 2021
A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/
08:39
March 29, 2021
Look Forward - Spring 2021 - Issue 173
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2021 (Issue 173)
53:34
February 24, 2021
From Small Beginnings: an interview with Lynda Cantor, founder and Honorary President of Retina UK
A written article based on this recorded interview is available in the Spring 2021 edition of our Newsletter, Look Forward: https://retinauk.org.uk/information-support/publications/
16:18
February 24, 2021
E-Newsletter January 2021
A PDF copy is available here: https://retinauk.org.uk/information-support/publications/
07:47
January 25, 2021
E-Newsletter December 2020
Latest Retina UK Podcast features Luxturna treatment Retina UK Annual Conference The Big Give Christmas Challenge Charles Bonnet Syndrome Patient Information Event Local groups Christmas Raffle Tech tip Sight Village news 10 for 10 Virtual Challenge
07:14
December 4, 2020
First NHS treatment for an inherited retinal dystrophy - Retina UK speaks to three recipients
Retina UK Research Development Manager Kate Arkell speaks to three of the first people to receive the Luxturna (voretigene neparvovec) treatment in the UK. Jake, Lee and Matt all received the Luxturna gene therapy at the start of 2020. They all have two faulty copies of the RPE65 gene and are living with Leber congenital amaurosis type 2 (LCA2) and severe early-onset RP.
33:25
November 30, 2020
Look Forward - Winter 2020 - Issue 172
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2020 (Issue 172)
01:05:21
November 2, 2020
E-Newsletter October 2020
This edition includes details about: The Retina UK Christmas raffle Usher Kids UK family Zoom calls Charles Bonnet syndrome patient information event The difference we made in 2019 Virgin Money London Marathon 2021 Volunteers needed to test new memory stick project
06:21
October 13, 2020
The new MyEyeSite application and how it will give people living with rare eye conditions ownership of their own digital medical data
Retina UK Research Manager, Kate Arkell, speaks to Professor Andrew Webster, Professor of Molecular Ophthalmology at University College London and Consultant Ophthalmologist at Moorfields Eye Hospital; Dr Nikolas Pontikos, Computational Scientist, currently a Eye Moorfields Charity career development Fellow at University College London and Nick Nettleton, Founder and CEO at Loft Digital. The MyEyeSite application aims to give people with living with rare eye conditions ownership of their own digital medical data. https://myeyesite.health/ 
34:35
October 6, 2020
Impact Report 2019
Thanks to you ... The impact we made in 2019
03:42
September 22, 2020
E-Newsletter - September 2020
This E-Newsletter includes information about: Our BBC Lifeline appeal Virtual local group meetings Research funding Royal Parks half marathon Volunteers needed to test new app Christmas raffle Audio material Feedback
06:56
September 15, 2020
Look Forward - Summer 2020 - Issue 171
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2020 (Issue 171)
46:49
July 20, 2020
Retina UK COVID-19 response - 17 March 2020
This is a voice recording of an article posted on the Retina UK website: https://retinauk.org.uk/general-news/retina-uk-covid-19-response/
02:37
March 17, 2020
Look Forward - Spring 2020 - issue 170
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2020 (Issue 170)
51:35
February 28, 2020
Look Forward - Winter 2019 - Issue 169
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2019 (Issue 169)
45:58
November 18, 2019
Retina UK Annual Conference - September 2019
Listen to the audio recordings from the Retina UK Annual Conference on 28 September 2019 in Milton Keynes.
04:24:11
September 28, 2019
Retina UK Professionals' Conference 2019
Listen to the audio recordings from the Retina UK Professionals' Conference on Friday 27 September 2019 in Milton Keynes
03:45:57
September 27, 2019
Look Forward - Summer 2019 - Issue 168
The latest newsletter from Retina UK containing updates from all areas of the charity; the latest research news; our Annual Conference and other events; the information and support we provide and the difference this makes. None of this would be possible without your support and we also celebrate the many ways you get involved.
45:21
August 13, 2019
Findings from sight loss survey 2019
National sight loss charity Retina UK has published its unique insight into the experiences of those living inherited retinal conditions. Almost 1,000 people completed a survey earlier this year to help the charity understand the real-life experiences, challenges and expectations of those living with these conditions. Tina Houlihan, Chief Executive, said: “We are an organisation entirely focussed on people living with inherited retinal dystrophies; to make the biggest difference for our community and have the right priorities we need to constantly learn more about real-life experiences, challenges and expectations of families living with these conditions.”
49:42
July 24, 2019
Look Forward - Spring 2019 - Issue 167
Our printed Newsletter, Look Forward, is produced three times per year. It is available in print, on audio, in digital format and also in Braille. For more information and to subscribe to Look Forward, please visit:  https://retinauk.org.uk/ 
51:18
April 16, 2019
Look Forward - Winter 2018 - Issue 166
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2018 (Issue 166)
41:44
November 12, 2018
Look Forward - Summer 2018 - Issue 165
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2018 (Issue 165)
40:47
August 13, 2018
RPFB Annual Conference 2018
Below are recordings from the RP Fighting Blindness (now Retina UK) Annual Conference held on 23 June 2018. Welcome & Intro Dr Stephen Hicks presentation Victoria Claire presentation Dr Laura Brady presentation Voice Control presentation Dr Mariya Moosajee presentation Prof Susie Downes presentation & Prof John Marshall Award OxSight Workshop RP Question time & Conference Close Annual General Meeting
04:39:38
June 23, 2018
Look Forward - Spring 2018 - Issue 164
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2018 (Issue 164)
42:02
May 4, 2018
London Information Day - 7 December 2017
Below are recordings and copies of the presentations from the RP Fighting Blindness (now Retina UK) London Information Day held on 07 December 2017. London Information Day – Part 1 London Information Day – Part 2 London Information Day – Part 3
03:39:11
December 7, 2017
Look Forward - Winter 2017 - Issue 163
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2017 (Issue 163)
37:24
November 8, 2017
Look Forward - Summer 2017 - Issue 162
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2017 (Issue 162)
44:46
September 6, 2017
RP Fighting Blindness Annual Conference 2017
24 June 2017 Exhibition, stands and registration open Convene and Conference Welcome (5 mins) Chairman, Don Grocott Presentation one: Small Molecule Therapies (30 mins) Professor Mike Cheetham Presentation two: Changing the Final Destination – correcting the mistakes in our genetic make up to prevent disease progression (20 mins) Professor Tara Moore Tea and coffee break (40 mins) with a chance to view the stands and chat Please reconvene promptly for the second session Genetic Testing in RP – an update (30 minutes) Professor Susie Downes The John Marshall Award – RP Scientist of the Year presentation (15 mins) Presented by Professor John Marshall MBE, RPFB Trustee Chief Executive’s Conference Address (15 minutes) Tina Houlihan, Chief Executive, RP Fighting Blindness Lunch (55 mins) - Lunch is provided and the stands will remain open Please reconvene promptly for the afternoon session Inspirational speaker: Steve Bate MBE (30 mins) Workshop Sessions (60 mins) Genetic Management (Held in main room) Retinal Implants (Held in room two) Benefits (Held in room three) RNIB Connect (Held in room four) Employment (Held in room five) Tea and Coffee Break (30 mins) with a chance to view the stands and chat Please reconvene promptly for the final session RP Question Time (60 mins) Chaired by Professor John Marshall MBE and joined by this morning’s medical speakers Chairman’s Conference Address (10 mins) Don Grocott, Chairman of the Board Annual General Meeting (35 mins) The formal business matters of the charity Non-members are welcome to attend but are unable to speak or vote on any resolution
04:15:14
June 24, 2017
Families Conference 5 - 7 May 2017
Below are recordings and copies of the presentations from the RP Fighting Blindness (now Retina UK) Families Conference, held 5th to the 7th of May 2017. Welcome & Introduction  Inherited Retinal Dystrophies and Syndromes – Prof Andrew Webster  What can an alliance of patients and professionals achieve – Prof Graeme Black Medical Q & A The current clinic experience for families – Rob Henderson The Genetic Eye Clinic experience – Theo Gale Life beyond diagnosis – Laura Ross How families cope and provide the right support for their children – Bo Anderson Q & A Translating Science into Medicine – Dr Mariya Moosajee Science Q & A A Family Story – Chloe Joyner & Bhavini Makwana Pathway to support for education – Wendy Sainsbury The Appreciative Enquiry Session (part 1) The Appreciative Enquiry Session (part 2) The Appreciative Enquiry Session (part 3) The Appreciative Enquiry Session (part 4) The Appreciative Enquiry Session (part 5) The Appreciative Enquiry Session (part 6)
06:37:55
May 8, 2017
Look Forward - Spring 2017 - Issue 161
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2017 (Issue 161)
41:27
April 18, 2017
Look Forward - Winter 2016 - Issue 160
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2016 (Issue 160)
42:04
November 14, 2016
Aberdeen Patient Information Day - 15 September 2016
Below are recordings and copies of the presentations from the RP Fighting Blindness Aberdeen Patient Information Day held on 15 September 2016. Aberdeen Patient Information Day – Part 1 Aberdeen Patient Information Day – Part 2 Aberdeen Patient Information Day – Part 3 Aberdeen Patient Information Day – Part 4 Aberdeen Patient Information Day – Part 5
02:24:55
September 15, 2016
Look Forward - Summer 2016 - Issue 159
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2016 (Issue 159)
46:30
May 12, 2016
Look Forward - Spring 2016 - Issue 158
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2016 (Issue 158)
42:50
February 29, 2016
Look Forward - Winter 2015 - Issue 157
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2015 (Issue 157)
35:23
December 14, 2015
Look Forward - Summer 2015 - Issue 155
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2015 (Issue 155)
52:52
May 29, 2015
Look Forward - Spring 2015 - Issue 154
This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2015 (Issue 154)
44:24
February 26, 2015
Look Forward - Winter 2014 - Issue 153
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2014 (Issue 153)
47:33
December 1, 2014
Look Forward - Summer 2014 - Issue 151
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2014 (Issue 151)
54:37
May 28, 2014
Look Forward April 2014 (issue 150)
The print edition of this newsletter is available on Issu: https://issuu.com/home/published/150spring2014
56:43
April 1, 2014
Look Forward - Winter 2013 - Issue 149
This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2013 (Issue 149)
44:28
November 29, 2013
Look Forward - Autumn 2013 - Issue 148
This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2013 (Issue 148)
43:46
August 30, 2013
Look Forward Issue 146 (Spring 2013)
Contents include: RP Awards Letter from the Chief Executive Gene therapy update Olympic values award for Toby Rhodopsin RP Project: the sequel Retinal implant approved by FDA Retinal implant AG study results More than just positive spin The RP tandem challenge Round the island walk Carrots night walk 2013 New York marathon The RP Conference 2013 Conveting the constitution Meet the researcher Changing faces at RP Fighting Blindness 'Team Finlay' running for RP research The RP Fighting Blindness short story competition 2013
01:00:54
March 1, 2013
Look Forward Winter 2012 - Issue 145
Contents include: The Gene Team appeal Letter from the Chief Executive Second Sight milestone for people with RP New source for stem cells may help save sight Lottery funded project ends Neurotech announce results of clinical study Carole Holmes Run for RP Fighting Blindness! Marathon girl Easy fundraising Ways of seeing Stars of our community The power of dance Outreach update RAG weekend 2013 Isle of Wight walk to save sight RPFB membership
48:05
December 1, 2012
Look Forward Issue 144 (Autumn 2012)
Contents include: Retina International World Congress Letter from the Chief Executive The RP Conference 2012 Charity of the Year Running events Stars of our community Outreach update Olympic torchbearers shine a light Jeans of Genes
46:51
September 1, 2012
Look Forward Spring 2012 (Issue 142)
Contents include: £1/4m boost for RPFB Letter from the Chief Executive Trustees approve research grants ACT report stem cells as 'safe' Inherited blindness: new genetic testing Treatment: the dangers of misinformation Carrots nightwalk - see London in the dark 2012 High achiever Driving RPYP The RP Conference 2012 RP Awards 2012 We need you Outreach update Running events Prize draw Retina International congress 2012 Stars of our community
42:36
March 1, 2012
My Vision of Hope - A remarkable story
by Lynda Cantor with Yvonne Higgins Read by Hilary and Geoff Strutt
05:29:11
June 1, 2006
BRPS Newsletter - Winter 2004
The British Retinitis Pigmentosa Society newsletter.
30:23
December 1, 2004
BRPS newsletter - Autumn 2004
Newsletter from the British Retinitis Pigmentosa Society
01:15:00
September 1, 2004
BRPS newsletter - Summer 2004
Newsletter from the British Retinitis Pigmentosa Society
01:07:33
July 1, 2004
BRPS newsletter - February 2004
Newsletter from the British Retinitis Pigmentosa Society
01:06:41
February 26, 2004
BRPS newsletter - December 2003
the latest newsletter from the British Retinitis Pigmentosa Society
01:14:25
December 1, 2003
BRPS newsletter - Autumn 2003
Newsletter from The British Retinitis Pigmentosa Society
01:05:35
September 1, 2003
RPFB newsletter - March 2003
Newsletter from RP Fighting Blindness
01:08:25
March 1, 2003