Retina International Youth Conference Sparks Hope

Retina International proudly conducted the second annual Virtual Youth Conference on August 12th and 13th, 2021 via Zoom. The theme of the conference centered around hope for the future. The event was organised by the Retina International Youth Council, a special interest group representing young adults and parents of minors affected by retinal degenerative conditions.

Day 1 began with a welcome from Marina Sutter, the Interim Chair of the Retina International Youth Council. Marina talked about the mental, physical, social, and spiritual barriers that the visually impaired community face, the structure of the organisation, and how and why one might get involved.

 

Genetic Testing

Then we heard from Michelle Glaze, Associate Director of Professional Outreach for the Foundation Fighting Blindness, on the importance of genetic testing. She discussed how genetic testing can help determine the chance of a child inheriting a retinal disease, as well as determine if one is eligible to participate in clinical trials. We also heard from Kari Branham, Director of Ophthalmic Genetic Counselling for the University of Michigan’s Kellogg Eye Centre, who discussed the step-by-step process of genetic testing and the role of a genetic counselor.

Our Youth Council member in Canada, Shaini Saravanamuthu, as well as Russia’s patient advocate Kirill Baybarin, gave different perspectives—their personal experiences with genetic testing, and the importance of maintaining hope throughout the process. On addressing why she got genetic testing done, Saravanamuthu discussed how it helps clinicians and scientists understand conditions and develop possible treatments. She told the audience, “we never know what our results may help discover,” emphasising the sentiment of hope for the future.

Access and Enablement

After a short break, the Access and Enablement session began. Doug Goist, Program Manager of Workforce Development at NSITE, talked about the importance of technology in aiding independence. He showed participants some interesting apps and gadgets for the visually impaired, such as WayAround tags, a tag-and-scan system that connects to one’s smartphone to help store information about household items. He also mentioned the PenFriend 2, another audio labelling device, and OrCam MyEye, a small device that attaches to one’s glasses and can take photos of documents and locations, then read or speak the text into one’s ear. Goist also mentioned two free apps, Be My Eyes, a crowdsourcing app which connects with volunteers across the world who help people with low vision navigate and identify things, as well as a Microsoft app called Seeing AI, which helps read documents and describe one’s surroundings.

Dr. Karen Wolffe, owner of Career Counselling & Consultation, LLC in Austin Texas, spoke next. She shared information about Project Aspiro, a hugely helpful resource developed by the World Blind Union for people beginning their career search. Wolffe’s overarching advice for approaching transitions in life was to “begin with the end in sight.” She suggested defining your goals and then meeting the people and taking the steps that will bring you closer to that goal. “It’s always to your advantage to have more people… on your team,” Wolffe said. She encouraged reaching out to your networks, allaying employers’ fears and hesitations with clear communication, finding mentors to support you, and more.

Finally, Dr. Kirk Adams, President and CEO of the American Foundation for the Blind (AFB), shared his personal experience as a blind job seeker and offered advice for those beginning their careers. He discussed the importance of having high expectations for yourself, and a high “internal locus of control.” He also talked about gaining experience by taking on responsibilities in volunteer organisations and job positions as soon as you can.

Personal Interest

The second day of the conference, on August 13th, began with four interactive break-out rooms revolving around different areas of personal interest: dating, career, family and parenting, and mental health. Participants joined the rooms of their choosing to have in-depth and open conversations with their peers and the leaders of the Youth Council.

Research and Innovation

The last part of the conference was the much-awaited Research and Innovation session. Ben Shaberman, Senior Director of Scientific Outreach at the Foundation Fighting Blindness, gave a thorough presentation on emerging therapies for retinal degenerative diseases that are in, or approaching, clinical trials. The discussion included reviews of studies for gene therapies, stem-cell treatments, and optogenetic approaches. Then we heard from a panel of young researchers around the globe: Meltem Kutluer, Laura Whelan, Dr. Emilia Zin, Oswaldo Perez, and Dr. Gavin Arno. The researchers shared what projects they’re working on, how they found themselves in the field of Retinal Disease, and the importance of involving patients in research. “It’s important to recognise the patients are the centre of all this,” Dr. Arno said on remembering the purpose behind research.

 

The conference was developed as a means for people to learn, network, ask questions, and join a community. Over 100 people registered for the event around the globe and others followed the livestream on the Retina International YouTube channel. We look forward now to the next Retina International Youth Conference, set to take place during the Retina International World Congress, scheduled for June 2022 in Iceland.

 

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