Gathering members and friends of Fighting Blindness to talk about advances in vision research and what it means to our community is an important part of what we do. We were very pleased to welcome almost 100 guests to our 2016 Annual General Meeting (AGM) in the Ashling Hotel, Dublin, on April 16.
Members and colleagues had the opportunity to catch up and chat over a soup and sandwich lunch, which was followed by the business meeting. This included the Chairman’s annual report and an introduction to the newly appointed chief executive, Kevin Whelan, who expressed his pleasure at meeting the membership and his assurance that he would undertake the position with care, respect and drive. Time was also taken to express huge gratitude to the outgoing chief executive, Avril Daly, who has taken the position of CEO at the global organisation, Retina International, after 15 years with Fighting Blindness.
Staff members gave overviews of the main activities of the research, counselling, advocacy and fundraising departments, demonstrating how we are working hard to fulfil our goals and pursue the Fighting Blindness commitment to find treatments and cures for blindness, support people living with sight loss and empower patients. We also presented the Anne Byrne Memorial Award to members Cearbhall O’Meadhra and Albert Brown. These gentlemen have been extremely committed to the Exchange Club, a weekly technology support group organised by the Insight Counselling Service which aims to help people with different levels of vision to get the most out of technology available today. We are hugely thankful to them for their dedication to Fighting Blindness. The support they have given has helped so many people and they are extremely worthy recipients of this year’s award.
While we covered the ordinary business usually conducted at AGMs, we were especially pleased to revitalise our usual format with a different approach. This involved ophthalmologists and scientific researchers giving conversational and personal updates during roundtable discussions. Those who participated were very familiar with Fighting Blindness and well known to our members. They worked together to explain some of the significant developments in their fields, which were relevant to the people attending the meeting. Each table was facilitated by a member of staff and a member of the board. There was lots of time for questions in this intimate setting which allowed for specific conversations. There has been a lot of excellent feedback from the event and it has all been very positive, particularly in relation to the roundtable discussions, which our members found to be informative, interesting and enjoyable.
The main topics that were discussed during the scientific roundtable sessions concerned the Target 5000 initiative in which Fighting Blindness is aiming to provide genetic testing for the estimated 5,000 people in Ireland who have an inherited retinal condition. Several of the discussions addressed this process and how it allows for the patient to be screened against all of the known genes involved in retinal disease, and then if a known mutation doesn’t come up, the genes are searched further for novel, or new, mutations which are then modelled and verified. This can be a long process, which explains why it sometimes takes so long to get a result, but there is continuous activity from a scientific perspective. One of the scientists explained that the blood samples which have been taken from patients are retested every 18-24 months if they have not found something previously. Once a mutation is identified, it then needs to be verified by an accredited lab, before the clinician can pass the information on to the patients. Many attendees found it very satisfying to know that the Target 5000 project is moving into this phase and that more participants will be getting their results soon. The scientists also highlighted that while
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it seems like a long time for each individual waiting for results, the timing is actually helpful because many potential therapies are only in Phase I development, so the project should be providing mutation data just as these projects move towards treatments. The scientists were also careful to reiterate that there are a multitude of approaches to treatment that address sight loss at different stages and that not everyone will be able to avail of each therapy, but that it is easier for peoples’ clinicians to discuss things that do become available in the future when patients have a genetic diagnosis, and, most importantly, clinicians can give them more information about their disease progression.
The medical roundtable sessions provided the occasion for ophthalmologists to spend time discussing people’s specific conditions with members who had questions or concerns about their own situations. This was especially useful for people who, either themselves or a family member, had been recently diagnosed. The doctors were able to give practical information and suggestions to these members and the Fighting Blindness staff were able to ensure that everyone knew of the support services offered by the organisation, relating to information, the Retina conference and most importantly the Insight Counselling Service. Some questions which were specific to peoples’ conditions were answered by the clinicians on a personal and one-to-one basis.
Many of the conversations which occurred during the discussions are topics which are of continuous interest to Fighting Blindness and we look forward to developing this type of forum even further as we hold the breakout sessions at the Retina Conference on Saturday, November 12, 2016.
We are enormously grateful to all of the scientists and doctors who gave their time to attend our AGM and for their valuable help and support in making sure that we can provide meaningful and helpful information and support to our members. Many thanks to all those who attended – we hope that you enjoyed the day and look forward to seeing you all at a Fighting Blindness event soon.