Retina Youth Conference 2020

Day 1: 24 August, 2020

The Retina International Team were delighted to welcome 123 attendees to our virtual Retina Youth Conference  on August 24th from 12:00 CET. The event was hosted by Interim Chair of the Retina Youth Council, Marina Sutter, and entailed webinars from ophthalmology specialist Kirk Stephenson from the Mater Misericordiae University Hospital in Dublin Ireland, Ben Shaberman, Senior Director of Scientific Outreach with Foundation Fighting Blindness (US), and finally from Marina Sutter, who is presently a student of German and residing in Germany.

The conference opened with a few words from our esteemed President, Ms Christina Fasser, who expressed a call to action for young people to actively engage in patient organisations and networks; “[The] Youth Council, that’s for you, and you have to make it happen…[it is] extremely important that young people support each other”.

After a warm introduction from Marina, ophthalmologist Kirk Stephenson took to the virtual floor to provide the background to genes, inheritance, and diagnosis of retinal degenerative diseases. Questions from the floor raised issues such as timeliness of genetic testing to facilitate accurate diagnosis and therapeutic intervention.

Ben Shaberman shared with us an overview of the current state of therapeutic research, highlighting the 40+ clinical trials presently ongoing to tackle retinal degeneration. He again reiterated the essentiality of genetic testing, which can incur a change of clinical diagnosis, access to clinical trials, and identification of appropriate therapies. Ben shared with our attendees recent advancements in gene therapies, stem cell therapies such as ReNeuron, as well as technologies like Bionic Sight. He also highlighted some very promising retino-protective therapies in development, namely a powerful antioxidant by the name of Nacuity, a conal protective agent called sparing vision, and also Pro QR, an RNA therapy.

After a short break, Marina Sutter joined us once more to discuss research and the role of Public & Patient Involvement (PPI). This refreshing and insightful talk discussed the history of research, research bias, and the need for more widespread practice of PPI in research. “Research is a living, breathing thing. It grows with us,” says Marina, using the Bronfenbrenner socioecological model to describe how change must happen from within before approaching it from an external policy level. She highlighted the need for a shift of paradigm for research and patient communities, and developing a new, collaborative research journey with patients.

Day 2: 25 August, 2020

The second day of the Retina Youth Conference followed a theme of patient fulfillment and empowerment.

Gilbert Muhumuza from Uganda kicked off the day with a presentation on Assistive Technologies for the Blind and Visually Impaired. He highlighted the history of assistive technologies, and the journey from braille to screen reading programmes such as JAWS. Gilbert laid out an optimistic view of the future of Assistive Technologies, where innovations such as self-driving cars, 3D-printing, and robotics may all play pivotal roles in empowering visually impaired people to live as independently as possible.

Vice President of Retina International, Head of Science at Retina South Africa, and self proclaimed “RP Warrior” Claudette Medefindt then took center stage, to share with us her own lived experience of Retinitis Pigmentosa. Her breathtaking, inspirational, and humbling talk provided attendees with an extraordinarily personal account of her and her family’s lives, as well as imparting golden nuggets of wisdom for young people with IRDs on how to treat themselves and their bodies with kindness. “The most important assistive device is your family and friends… Know when to ask for help.”

We were then joined by Allison Galloway, who shared with us her experience as a parent of two young children, Logan and Zoe, who both have Leber’s Congenital Amaurosis. Allison spoke of the emotional journey she felt at her son Logan’s diagnosis; “my grief turned to anger, and my anger turned to the burning need to find a solution… of which there was none”. Allison highlighted how engaging with her local organisations helped her find the information and resources to help Logan and Zoe live full lives. Logan and Zoe’s LCA has not held them back; they have played ice hockey, seen glaciers in Alaska, pursued their education in public schools, and will continue to make the most of every day thanks to their fighting parents.

Our final speaker was Karl Meesters, who is a life coach living with IRD, and works with Olympians and Para-Olympians alike. He implored our young attendees to follow their passion, strategise around their strengths, and focus on the process, not the result. “Don’t wait for others to solve your problems, they will be late. Be the captain of your own ship. Make noise.”

Concluding on this powerful message and motivating call to action, Retina International announced to our youth cohort the development of our Patient Academy programme, the mission of which is to enable those affected by retinal degeneration to navigate through the world of research and clinical trials. The vision of this initiative is that patients will be empowered agents of change within their own communities, and pave the way to them being engaged and valued stakeholders in the quest to find new therapies.

We would like to extend our sincere thanks to the organisers of the Retina Youth Conference, our hosts Sean Heagney and Marina Sutter, all of our attendees, and finally to Novartis for supporting the event.

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