Jul 8, 2022

Updates from Iceland: Retina International World Congress & Retina Youth

In June 2022 a small team from FBC attended the Retina International World Congress in beautiful Reykjavik, Iceland. We sat down with FBC Manager of Education, Morgan Ineson, and FBC youth representative, Shaini Saravanamuthu to learn more about their experience.

Can you tell us about Retina International and how FBC is involved?

Morgan: Retina International (RI) is a global umbrella organization for patient-led charities and foundations who support research into rare, genetically inherited, and age-related forms of retinal disease. FBC has been a member of RI for many years, and we are able to connect with patient groups from around the world to learn more about research into inherited retinal dystrophies. We were so excited to be able to meet with our global colleagues and friends in person after the past two years of virtual meetings. I had the opportunity to attend both the Youth Summit and the scientific conference, and I came home buzzing with new ideas about how we can share this exciting information though our educational programs.

How did you get involved in the Retina International Youth Council?

Shaini: I was fortunate enough that the Fighting Blindness Canada nominated me to be the Canadian representative on the Retina International Youth Council! I had my first meeting with the Youth Council in July 2021, and we got to work within in the first two weeks! I was so excited to translate my work with the FBC Young Leaders Program to a global platform with so many like minded individuals.

We started planning the Youth Conference back in January 2022. Our working group for this project consisted of 4 members from the Youth Council representing Australia, Brazil, Canada and Switzerland. You can imagine how time zones made it interesting for whenever we had meetings! We divided the sessions, and we all took care of one and worked on them and connected every week to collaborate and discuss.

What were your highlights from the conference and your time in Iceland?

Morgan: The whole week was fantastic! I thoroughly enjoyed the youth conference and getting to witness the incredible work of our past Young Leader co-chair Shaini and her team. I was especially struck by an excellent session about genetic testing and why it is important to think about, especially for youth.

During the scientific conference, several important and exciting themes emerged. Many speakers discussed the right to access genetic testing around the world and how important it is for doctors and scientists to understand how these genes are expressed in our phenotype.

Another hot topic at ophthalmological conferences this year has been about clinical trial design and how important it is to choose the right outcomes, or endpoints, to measure success. I was also very happy to hear about collaborations happening all over the world – not just between scientists, but also including patient groups and industry. By working together, I have great hope that we will continue to see exciting developments in treatments for many forms of vision loss.

Iceland is an incredible place to visit, and I would highly recommend it. I was fortunate enough to include some personal time in my trip and enjoyed travelling around the country to see some of the most spectacular nature on earth. FBC president and CEO Doug Earle and I even were able to go puffin watching and see these beautiful birds in the wild. I also met my Cycle for Sight challenge in Iceland. I wanted to walk 100,000 steps and I broke that goal with 123,874 steps!

Shaini: For the youth program, we started each day with yoga to help us get focused for the day to come We had sessions about the history and future of the Youth Council, genetic testing, careers and most importantly, were able to share our lived experiences with each other. We were able to highlight the ways in which we have thrived regardless of what society may think “we can’t do.”

On the last day we had a session with Dr. Elise Heon from Toronto. She was AMAZING and spoke to us about emerging therapies and research. She also brought up an important topic about patient and doctor relationship and how as the patient it is our job to advocate for our own health and speak up!

The best thing about this conference was the connections I made, and I will forever be grateful for that. It’s always amazing to meet individuals who are going through a similar journey as you. Our families and friends will always be there for us, but it takes fellow visually impaired individuals to really understand our journey and struggle. This week was so inspiring and motivating to be with other young adults who have so much ambition to change the future! I am so excited to see our youth council grow, make an impact, and help raise awareness that the vision loss community is thriving and ready to make some noise!

Iceland is gorgeous and we were there for their summer so that meant 24 hours of daylight, which I love, because I experience night blindness due to my retinitis pigmentosa, so I was thriving in Iceland! The views, the people, the food and the hot springs are all amazing! It’s a place you must put on your bucket list!

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