Welcome to the winter edition of the Visionaries newsletter. It’s been a busy, and successful, end to 2019.
This year we celebrated the 20th birthday of our Retina conference, an annual event bringing together the world’s leading researchers and clinicians. Our most successful year to date, Retina 2019 completely sold out, was officially opened by Paschal Donohoe, Minister for Finance and – thanks to the star appeal brought by actress Victoria Smurfit and her daughter Evie – the conference appeared in all of the country’s national newspapers.
To round off a fantastically successful Retina 2019, the team traveled to the K-Club in Kildare to co-host a fundraising ball with Victoria Smurfit and her daughter Evie. We raised €113,300 on the night and proceeds from the evening will fund on-going and new research into treatments and cures for sight loss.
In early December we launched the results of a major research study – IRD COUNTS – a first of its kind look at the individual burden and economic impact of inherited retinal degenerations (IRDs) in the Republic of Ireland.
Currently, the evaluation of new medicines or therapies for reimbursement in Ireland does not take well-being costs into account. We presented these new findings in the hope of opening a dialogue with the Irish Government to create a new framework for assessing value for money.
When we ask for meetings with ministers, our requests go further if we have hundreds or maybe even thousands of members.
If you have a family member or friend who is living with sight loss, please encourage them to become a member. There is strength in numbers, and we’ll need it next year.
In the lead up to the next general election in 2020, we will be calling on all of you to stand up with us and raise your voice. We want decision makers and politicians across the country to know about the true cost of living with sight loss and the importance of our work. We need your voice to make that happen.
Keep an eye out for emails from us and social media updates in early 2020 and join us in the fight.
From all of us at Fighting Blindness, thank you for your on-going support. We wish you a peaceful Christmas and happy New Year.
Chief Executive Officer