The Cure is Waiting… Making it Happen
at the Retina International World Congress
Fighting Blindness to Offer Leading Eye Experts for Questioning in Public Engagement Day
The countdown is on for what will be one of the biggest global gatherings of eye experts taking place in 2024. Hosted by Fighting Blindness, the Retina International World Congress takes place in Dublin from June 5-8 with a public engagement day on Saturday June 8 set to be the highlight for the sight loss community.
The day offers a rare opportunity for people who are blind or who have a vision impairment to hear about the latest advances in treatments and cures, to ask questions of leading eye experts about their conditions, and to meet with peers and share experiences.
The congress, which will take place at the Dublin Royal Convention Centre, Radisson Blu Royal Hotel, will feature speakers at the vanguard of eye research, treatment and care across a number of events taking place over four days.
The event brings together scientists, clinicians, patient advocates and people with a vision impairment from around the world in a shared effort to combine collective know-how and expertise to zone in on cures.
For those wishing to attend the public engagement day, registration is now open at www.fightingblindness.ie
Stars in our Eyes
Special guest on the day is Tony Award-winning Broadway producer, psychologist, entrepreneur, and LGBTQ activist, Paul Boskind. Paul, who divides his time between San Antonio in Texas, New York City, and his Clonbrock Castle home in Galway, will speak about his experience of being diagnosed with Stargardt disease at the age of 21 and how best to navigate the mental health challenges of vision loss. With his showbiz background, it is perhaps fitting that Paul’s contribution will be preceded by a stage performance from the Visionaries Choir, Ireland’s only choir for people with a vision impairment.
The genetic testing pathway and the importance of knowing your sight loss gene is the subject of a joint presentation by Prof. Frans Cremers, Radboud University Nijmegen, the Netherlands, and Prof. Bart Leroy, Ghent University, Belgium. Prof. Cremers has been central to the identification of 32 inherited retinal disease-associated genes, while Prof. Leroy is involved in the development of gene therapies. Indeed, Prof. Leroy helped to develop Luxturna, the first FDA-approved gene therapy for people with Leber congenital amaurosis and retinitis pigmentosa.
The challenges facing clinicians and patients in getting new medicines approved will be the subject of a discussion featuring consultant ophthalmologist, Prof. David Keegan. With an over-emphasis on vision restoration, as opposed to vision stabilisation, in the approval process, the patient community is growing increasingly frustrated that they are being denied new medicines that have shown promising results in clinical trials, including for retinal diseases such as Age-related Macular Degeneration (AMD).
AI Going Boldly…
With AMD affecting more than 100,000 people in Ireland, there will be particular interest in a session on the latest updates on care and therapies for AMD by Dr Tiarnán Keenan, from the National Eye Institute, USA. Dr Tiarnán has dedicated his life’s work to designing more effective therapies for AMD, with his current research focusing on analysing its genetic background, delaying its progression, and using artificial intelligence (AI) to aid its diagnosis and risk prediction.
Separately, computer scientist William Woof, who was diagnosed with retinitis pigmentosa in 2011, will talk about his work on the Eye2Gene project which aims to apply AI to retinal imaging in diagnosing different types of inherited retinal disease.
The event will also see updates on new therapies in the pipeline for a range of conditions, the latest in assistive technologies, and how we can best look after our eyes to maintain optimum eye health.
Seeing the “Impossible”
For Dr Ellen Moran, Scientific Programme Manager at Fighting Blindness, the identification of genes implicated in vision loss, and a genetic diagnosis of patients, are key to ensuring no delay in accessing new therapies that may save and restore their sight:
“The Retina International World Congress taking place in Dublin this June offers a stellar line-up of vision experts foremost in their field and is one of the key gatherings taking place around the globe in 2024.
“Our speakers range from those identifying the genes involved in sight loss, to those who are developing therapies to arrest, delay and reverse sight loss, by targeting those specific genes. That is why ongoing work such as our Target 5,000 programme is so important in providing people who have a vision impairment with a specific genetic diagnosis. It really doesn’t bear thinking about that a person should be deprived of sight-saving therapy, and seeing things that they never thought possible, due to not have a genetic diagnosis that would identify new treatments appropriate to their condition.
“It is rare to have such a gathering of international eye experts committed to treatment and cures on our own doorstep. This congress offers a valuable opportunity to profile the cutting-edge research and advances taking place, to pool ideas and share insights, and to forge new relationships and research endeavours. With spaces limited, I would encourage people with a vision impairment wishing to get up to speed on the latest research developments taking place, and who want to be inspired by others who have experienced a similar journey, to register for the public engagement day without delay.”
For the CEO of Retina International, Avril Daly, the conference marries developments at the laboratory bench with the lived experiences of people with sight loss, who are so crucial in informing the direction of research:
“This congress serves as a platform for global collaboration, where experts unite to accelerate progress in vision research and improve the lives of individuals impacted by retinal diseases. The congress will also highlight the importance of patient engagement and advocacy, with sessions dedicated to sharing people’s experiences and perspectives. This inclusive approach reflects the commitment of Retina International both to advancing scientific knowledge and to prioritising the treatments available to individuals living with retinal conditions.”
Top Five Tips for Better Eye Health by Mark Cahill, Consultant Ophthalmologist
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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, 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
