Word has it already a couple of families have connected at our recent first-ever event, Connecting the Community, which brought together over twenty-four people online for the very first time in Ireland. A truly informative and engaging afternoon with presentations from our guest speakers, getting to know a little more about our Board of Directors, and giving attendees the opportunity to share their personal stories, and more.
For those of you who could not join us on the day, we will be adding highlights from this event here over the coming weeks including an opportunity to watch back on each of our guest's presentation. You can find out more about our guest speakers and watch their presentations below.
We would like to express our sincerest gratitude to Dr Mark Pennesi, Jacqueline Turner, and Derek Lacey for taking the time to speak and share valuable information with the community. We also wish to express a huge thank you to all our attendees for their participation, and for their continued support and enthusiasm. We were delighted with the number of you that attended, and we are very much looking forward to creating even more events for everyone affected by Usher syndrome. Watch this space!
Our first guest speaker, Jacqueline Turner is well known in the Irish rare disease community working as a genetic counsellor for over 25 years where she has seen many families affected with a range of genetic conditions including Usher syndrome. In her live presentation at this event, she gave an thorough overview of genetics and Usher syndrome.
You can now watch this presentation here.
Derek Lacey was our second guest speaker and he is the President of the Irish Society of Hearing Aids Audiologists (ISHAA) and he joined us in a Q&A session where he spoke about the importance of choosing what is best for you in terms of selecting hearing aids and when to think about cochlear implants.
You can now watch this Q&A session here.
Dr. Mark Pennesi was our final guest and joined us live from America! He is Professor in Ophthalmology at the Oregon Health & Science University (OHSU) and Chief of the Ophthalmic Genetics Division at the Casey Eye Institute. He is one of many researchers who are working extremely hard to find breakthroughs to end blindness caused by IRDs including Usher syndrome. In his presentation to us, he provided an overview of all the different types of research that are ongoing, giving hope to a community that research is still progressing to find a treatment for sight loss associated with Usher syndrome.
Watch Mark's presentation here: