Paralympians Orla Comerford and Greta Streimikyte today officially launched the 2024 Retina International World Congress hosted by Fighting Blindness in Dublin.
One of the biggest global gatherings of eye experts this year, the congress brings together scientists and clinicians leading advancements in eye research from around the world. The conference will welcome over 500 delegates from 23 countries including the USA, Australia and Brazil.
As part of the event at the Dublin Royal Convention Centre, a public engagement day aimed at the sight loss community will take place tomorrow, Saturday June 8. The day offers a rare opportunity for people who are blind or who have a vision impairment, along with their families, to hear about the latest cutting-edge research developments taking place and to ask questions of eye experts.
The event will be live streamed, with full details to be found at www.fightingblindness.ie. A comprehensive agenda can be accessed here – https://tinyurl.com/RIWC24agenda
Their sights firmly set on the Paris Paralympics in August of this year, Fighting Blindness ambassadors Orla Comerford and Greta Streimikyte, have both experienced what it is to live with sight loss. Orla was just a child when she was diagnosed with Stargardt’s, an inherited retinal degeneration which impacts central vision. She is hoping to compete in the 100m in the T13 category for athletes with moderate vision impairment. Orla says:
“I was diagnosed when I was in primary school. I think for my parents to find out that their child has a vision impairment, that they can’t fix, and that there’s no cure, must have been very scary. They reached out to Fighting Blindness and were able to access support groups and link with other parents who had been through the same thing. They wanted to do their best to support and empower me to go forward in life with confidence and independence, and speaking with other parents, or people with visual impairments, really helped to inform this. They were also able to find out about the cutting-edge research that was going on, which gave them hope for the future.
“With Stargardt’s, my central vision is primarily affected, but I still have peripheral vision. As the condition is degenerative, and my eyesight is getting worse with time, I have no way of knowing how much eyesight I will have left in the future. However, knowing that Fighting Blindness supports and funds research that might one day help slow that deterioration, of course, brings some comfort and hope. In the meantime, I continue to live a full life, living each day as it comes, with the sight that I have, and looking forward to giving it my all in Paris this September!”
Greta, who has lived with retinopathy since birth will compete in the 1500m, also in the T13 category. Greta adds:
“Research is crucial as it gives individuals a chance to see. I was one of those individuals who was told that I would remain blind, but an experimental surgery saved some of my vision. If I had never had that opportunity, I probably would have been completely blind. It is so important to give those chances and hopes to people, because it can change their lives. The Retina International World Congress is important in providing an opportunity to share the newest research and technologies, not only among leaders in the field, but with the public also. It is important to have open conversations about sight loss, to ensure that those individuals who can benefit from the new research and technology do so. As an individual with visual impairment, I am proud to support Fighting Blindness in striving for innovation and research in this field.”
Genetic Eye Specialist and Consultant Ophthalmologist, Prof. David Keegan, will address the challenges facing clinicians and patients in getting new medicines approved:
“With the Target 5,000 programme funded by Fighting Blindness, we are playing our part in providing people who have an inherited vision impairment with a genetic diagnosis. Without that piece of knowledge, people won’t be able to access the sight-saving gene therapies that are coming down the tracks. We are now able to access and deliver disease-changing clinical trials and provide in-country approved therapies with the approved centre for advanced medicinal product delivery at the Mater Hospital.
“We also acknowledge the changes Government are making to match that ambition with an overhaul of the approval and reimbursement process. This should help avoid the delays we, in Ireland, experienced on approval of the world’s first gene therapy for inherited sight loss, Luxturna. We are also appealing to our global regulators to recognise the importance for patients of stabilising vision and optimising residual visual function, as much as restoring vision.
“In addition, one of the trials that I’m involved with at the moment is for dry AMD (age-related macular degeneration) which has no current approved treatment in Europe. It involves the placement of an intraocular telescope device in the eye to enhance vision and visual performance. With more structure and resource, we could scale up meaningful interventional clinical trial activity in the field of retinal disease and other ocular conditions such as glaucoma and optic neuropathies. The Clinical Trial Networks, National Registers and European Reference Network membership are great first steps.”
The principal sponsor of the Retina International World Congress is Johnson & Johnson Innovative Medicine. Among the other companies lending their support are AbbVie, Astellas, Boehringer Ingelheim, Roche, Fountain, and MeiraGTx.
For more information on the work of Fighting Blindness, visit www.fightingblindness.ie, and for more on the work of Retina International, visit www.retina-international.org
You can check out The Cure is Waiting, an animation by Fighting Blindness voiced by sight loss advocate and actor, Victoria Smurfit, here: https://youtu.be/7qLZg56w6-g
ENDS
Photo credit: Damien Eagers, Coalesce