The first meeting of Aniridia Network UK in Ireland took place on Saturday 8th April 2017, at the National Council for the Blind of Ireland (NCBI) in Dublin. And it was a great success.
The Ireland group was set up by Eleanor, who has sporadic aniridia. She was inspired by her attendance at the 2016 Aniridia Network UK (ANUK) conference in London, where she got to meet other people with aniridia for the very first time.
Following the conference, she arranged a meeting in Ireland for the following year, with the help and support of ANUK. The outcome was a very well attended event, with delegates from the Republic of Ireland and Northern Ireland.
There were many interesting guest speakers, namely:
- Prof. Dr Barbara Kasmann-Kellner, a renowned ophthalmologist and Chair of Aniridia Europe’s Scientific Committee. She addressed the group via Skype from Germany, discussing her work with aniridia patients, and answering questions about how to manage and treat the condition.
- Rosa Sanchez de Vega, the President of Aniridia Europe, via Skype from Spain, discussing the support and help that they can provide. Rosa has dedicated many years in bringing together patients, doctors and researchers, advocating for a legal framework for rare diseases.
- Martin Fleming, trustee of Aniridia Network UK, discussing the organisation and his own experiences with the condition.
- John Delaney, a psychologist and counsellor from Fighting Blindness based in Dublin. He spoke about the counselling services available to individuals and families affected by vision loss.
- Caitriona Dunne, Advocacy Manager at Fighting Blindness. She spoke about her work representing the views of people affected by vision loss and raising greater awareness.
- Avril Daily, who has Retinitis Pigmentosa and is CEO of Retina International, Vice President of EURORDIS (Rare Disease Europe) and chairperson of the Irish Genetics and Rare Diseases Organisation.
- Sinead Kane spoke about living with aniridia, and how it didn’t prevent her from achieving her legal qualifications and enjoying sport (including running 7 marathons on 7 continents in 7 days!).
- Fintan O’Donnell, who also has aniridia, talked about being a physiotherapist with his own clinic in Ennis. He was the former Chair of Vision Sports Ireland and worked with the Irish Paralympic Team between 2002 and 2013 at three Paralympic games.
You can find out more detailed information about each speaker, and the event organiser Eleanor Burke, by reading the full meeting agenda that was posted earlier this year.
The reaction to the meeting by those attending was extremely positive. Here are some examples of the feedback that was received.
“Of particular interest to me was the personal experiences of people with Aniridia and the presentation of Dr Kasmann-Kellner from Germany. I did not fully appreciate that Aniridia was more of a rare syndrome or collection of eye problems. It made more sense now to think of the condition as being a collection of discrete conditions each of which needs to be managed in their own right. It also made sense that from the start there was developmental damage which made recovery of full vision unlikely but preservation of remaining vision is the priority. It was interesting to hear of the potential new gene therapy treatment via eye drops or tablet in clinical trials in Canada.
There was so much information it was difficult to fit it all into the time allowed. Hopefully we can have more in the future.”
“My husband and I were so delighted to attend as parents to our 2 year old son, with aniridia, it was a very positive experience. We were able to meet with others who knew exactly what aniridia is. I have often found myself explaining my son’s condition to doctors who have never heard of this rare condition before. So to have a room full of people, in Ireland, who I didn’t have to explain it to was amazing.
Eleanor Burke organised the day perfectly with a panel of speakers who offered a well-balanced fascinating meeting. Discussions at the meeting ranged from: medical information on aniridia, clinical trial, Irish support groups available, Aniridia Network UK support, to personal experiences. It was an incredibly interesting day.
Aniridia Network UK have been a great support to me and my family. I’m delighted now that there is an Irish branch who are familiar with the Irish health systems and support and advice groups. To have a network closer to home certainly alleviates the ‘alone’ feeling of living with aniridia. I look forward to future aniridia event in Ireland.”
“Thanks again for everything. I appreciated all your assistance in order to get there for the aniridia lunch. It was so exciting to meet someone with sporadic aniridia in Ireland. All the speakers were so outstanding. The lunch was wonderful. I look forward to hearing from you, and meeting everyone again soon.”
“Well done Eleanor for organising this event. It was a very informative day and great to meet others who have Aniridia.”
Eleanor gave her reaction during a radio interview with Phoenix FM’s Access All Areas Show:
“Aniridia Network UK, have been superb. They’ve supported me all along since last May They gave me one of their trustees to work alongside over the past 11 months, Martin and James kept in constant contact with me as well throughout, so that was very good.
It is mainly through the social media that we’ve done it. And we’ve started up now an Aniridia in Ireland Facebook group as well. And I had a lot of help from a lady who herself has aniridia, Sinead Kane. People might have heard of Sinead, she was of course on the radio and the Late Late Show, and is a well known marathon runner. Sinead is fantastic with social media as well, so she did Twitter and Facebook for us.
Those delegates who were there listening were delighted with the programme that I had arranged. It was very successful, so I want to keep the momentum of it going. I was delighted with my conference.”
ANUK would also like to extend their gratitude to all the speakers and attendees for helping to make the event such a success. And very special thanks to Eleanor for all of her time and effort in organising it!