The conference was in conjunction with the International Usher Syndrome Symposium. As described by the Usher Syndrome Coalition Co-Founder and Chairman, Mark Dunning, it was “the largest gathering of the Usher syndrome community in history. Three days, four nights, nearly fifty speakers, dozens of interpreters, and more than three hundred attendees.”
Conference speakers and attendees came from at least 12 different countries. The first two days focused on scientific research and developments. It included reports and open mic discussions from and with many of the world’s leading scientists studying Usher syndrome. It was very technical. View Mark’s blog to learn more: “Progess! The State of Usher Syndrome Research After the International Symposium on Usher Syndrome”.
The panel I participated in was titled “Phychological Aspects: Patient Journeys”. I was joined by: Chloe Joyner (smiling in the picture) from England, who has a daughter with Usher syndrome, Elaine Ducharme, who is completely deafblind with Usher syndrome Type 1 and two people I first met through social media, Ryan Anderson from Utah who has Usher Syndrome Type 2 and is the PR Manager/Senior Editor at WatchPlayRead and Molly Watt from England, who is a leader in raising awareness for Usher syndrome.
Being on the panel was a nerve wracking experience. Nonetheless, I hope I helped to ease people dealing with Usher syndrome, that life can still be great and full of laughs! As Mr. Dunning states in his blog, I was funny. So I guess it went ok at least.
Here is the transcript of our panel along with a few moments that were filmed.
Thank you to the Usher Syndrome Coalition for inviting me and putting on the conference. It was an interesting and fun experience. I made new friends and there was a real sense of excitement bringing the Usher syndrome community together. My hope is for people dealing with Usher syndrome to learn about the Usher Syndrome Coalition, the conference, and the community we are building. I encourage individuals who have Usher syndrome and their families to sign up for the registry to help stay connected!