The Retina 2016 Public Engagement Day was our biggest yet, with over 300 people in attendance. Fighting Blindness CEO Kevin Whelan opened the event by welcoming attendees and encouraged all to engage with Fighting Blindness and add their voice to the work of the organisation.
Rio to Retina – Limited Sight, Unlimited Vision
Fresh from the Paralympic Games in Rio this September, Fighting Blindness were delighted to welcome members of Team Ireland to Retina. Orla Comerford and Jason Smyth, who both have Stargardt disease participated in an engaging and inspirational interview facilitated by RTE Sport’s Darragh Maloney. This was Orla’s first Paralympic Games debut and made the final in T13 100m category. For Jason, it was his third Paralympic Games and his fifth gold medal, also in the T13 100m. Named the ‘Usain Bolt of Paralympics’, Jason holds the Paralympic World Record for both the 100m and 200m. Jason showed his gold medal to the attendees and described how for the first time ever, the medals for the 2016 Rio Games are filled with tiny steel balls – each with a different noise when shaken. This new feature allows athletes who are visually impaired to identify the medals with different tones for each colour. He shared with the audience the responsibility he feels as an experienced athlete to motivate and inspire younger athletes and show people what can be achieved.
An Overview of Current Vision Research and Therapeutics
During research-focused sessions, invited experts in the field of retinal research spoke to those keen to understand and keep up to date on work happening around the globe in the quest to find treatments and cures for vision loss.
Dr David Gamm from the University of Wisconsin gave an informative overview on stem cells and described the first steps that have been taken toward the development of a stem cell based therapy.
Prof John Flannery from the University of California, Berkeley gave a comprehensive presentation of some of the promising vision research that is taking place around the world, particularly in the areas of gene therapy and optogenetics.
Spark Therapeutics, a US based gene therapy company were also represented at the conference and Dr Daniel Chung provided an encouraging update on their successful gene therapy programmes for Leber congenital amaurosis (LCA).
Condition Specific Breakout Sessions
The condition specific breakout sessions were once again one of the most valuable parts of the day for many people, providing a unique opportunity to speak with the doctors and scientists present.
There were many excellent questions in sessions focussed on rare inherited diseases generating insightful discussions between experts and people affected. Topics predominately centred on genetics and the importance of understanding inheritance patterns. Attendees also heard about the many advances currently taking place in the ocular field including gene therapy, optogenetics, CRISPR technology, and stem cell therapy.
In the AMD and Diabetic Retinopathy group, attendees learned about current treatments, patient care and secondary devices that can help people’s vision, including magnifiers and surgical devices. Other condition specific breakout sessions heard about the advanced surgical techniques that are evolving that will ultimately lead to much better prospects.
What’s in a genome?
The afternoon session began with Dr Sally Ann Lynch, Consultant Clinical Geneticist, Temple Street Children’s Hospital. Sally Ann described what makes up the human genome, how our DNA works and the difference between something that is hereditary and something that is genetic.
The importance of Self Care
The second talk of the afternoon came from psychotherapist Katrina Connolly who spoke about the importance of self-care.
Advocacy – Power in Numbers
Caitríona Dunne, Communications and Advocacy Executive with Fighting Blindness explained that advocacy simply means that we represent you our members and the issues that are important to you.
Patient and Public Involvement in Research and the Importance of Patient Reported Outcomes
Public and patient involvement (PPI) in research aims to create an active partnership between the patients and researchers, allowing the voice and perspective of the patient to help shape and guide research. As a patient led organisation, Fighting Blindness recognises the need for meaningful and collaborative involvement into the governance, priority setting and conduct of research. By enabling this process, we are ensuring that the real life experiences of patients are considered in decision-making processes around research. With over 300 members of the public in attendance, Retina 2016 was the ideal platform to hold a panel discussion on the topic of “Patient and Public Involvement in Research and the Importance of Patient Reported Outcomes”. We heard perspectives from researchers, clinicians, patient organisations and individuals who have been involved in PPI initiatives. Chaired by Mr David Keegan, the panel of experts included Emily Liu, Spark Therapeutics; Dr Paul Kenna, Royal Victoria Eye and Ear Hospital; Christina Fasser, President of Retina International; Ms Giuliana Silvestri, Belfast Health and Social Care Trust; Dr Avril Kennan, Head of Research and Advocacy, DEBRA Ireland.
Following a very interactive and positive discussion, it was agreed that patient reported outcomes play a vital role in discussions around research and development in retinal disease. The necessity for patients to develop partnerships with scientists and clinicians and direct research into areas which will bring added value and improve quality of life was also highlighted.
Christina closed the panel discussion by giving a report from a recent meeting that Retina International held with Foundation Fighting Blindness in the USA, the US Food and Drug Administration (FDA) and European Medicines Agency (EMA). The meeting focussed on patient reported outcomes and was a very positive beginning to building relationships in this area between scientists, doctors, patients and regulatory authorities.
Thank you to all the Retina 2016 speakers, panelists, sponsors, delegates, volunteers, media spokespeople and everyone who supported the event.
Fort more information about any of the above please contact firstname.lastname@example.org or 01 6789 004.