Public Engagement Day 2015 Report

This year’s Public Engagement Day was our biggest to date with almost 250 people attending. The programme was organised into sessions based on the three core pillars of our strategy: Cure. Support. Empower.

Dr Shannon Boye – Gene therapy and Directions for Taxi Drivers

Dr Shannon Boye of the University of Florida spoke on both days iof the Retina Conference and gave a great description to attendees about what she aims to achieve as a gene therapist. “You can think of a vector like a taxi cab, and the therapeutic DNA as the passenger inside,” Dr Boye explained. “We, as gene therapists, give a taxi driver directions on where that cab should go and where to drop the passenger off. Some of the passengers are smaller and require a small cab, but some passengers like the myosin7A gene affected in Usher syndrome type 1B or the ABCA4 gene associated with Stargardt disease are very large and will require a bigger taxi cab, or perhaps even two taxi cabs to shuttle the gene to the right location for drop off. It is our job to design the right taxi for the right gene”.

Why do therapies take so long to reach patients?

The highlights of the day included a panel discussion, chaired by Fighting Blindness Research Manager Dr Maria Meehan. The discussion focused on the medicines research and development process, and the length of time and cost required to get a therapy to human clinical trial and then to market. The panel was made up of a doctor, a scientist, industry representative and a person living with sight loss: Dr Paul Kenna, Royal Victoria Eye and Ear Hospital and Trinity College Dublin; Prof John Flannery, University of California, Berkeley; Siobhán Gaynor, Genable Techologies Ltd; and Christina Fasser, President of Retina International. This ensured a broad discussion encompassing a number of different perspectives

The condition specific breakout sessions were once again one of the most valuable parts of the day for many people. These sessions provide a unique opportunity to ask questions of the doctors and scientists present. Discussions in the groups for rare genetic conditions focused mainly on topics such as genetic testing, access to clinical trials and new areas of research. The discussion in the group for common conditions was predominantly about current treatments and patient care.

After lunch, attendees were treated to a performance by our fantastic Visionaries Choir, who made their public debut at the conference. Fighting Blindness members Conor Maguire and Cearbhall O’Meadhra then spoke about different types of accessible technology that can be useful for people with varying levels of sight loss. This was a very popular session and you can read about their suggestions here.

There was a presentation about the National Vision Coalition (NVC) Manifesto from Avril Daly, co-chair of the NVC, Mr David Keegan, Mater Misericordiae University Hospital and Fighting Blindness board member and Gerry Kerr, patient representative on the NVC. The Coalition is calling on all parties to commit to the inclusion of a National Vision Strategy in their programme for Government and is asking the public to support its Manifesto and raise the issue with all candidates in the run-up to the next General Election. You can read more about the National Vision coalition Manifesto here.

The Retina 2015 Conference was closed by Christina Fasser, President of Retina International.

 

Thursday, November 5 – Clinical Trials Roundtable Meeting

Friday, November 6 – Scientific Programme

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