Connecting the Community
A virtual event connecting the Irish USH community
***REGISTRATION NOW CLOSED***
We are very excited to announce our very first event, Connecting the Community will take place on #USHDay2022 (Saturday 17th September)! This will be a free virtual event open to all those who have Usher syndrome and their family members living in Ireland.
What can you expect from this event?
- An amazing virtual opportunity to connect and chat with other people and family members living with Usher syndrome in Ireland from the comfort of your home
- A chance to ask questions and share your experiences with others
- Hear presentations from our special guest speakers who will be providing advice and information. (see below)
- A chance to get to know the team behind Usher Syndrome Ireland
When: 17th September
Time: 2:30pm
Where: Zoom Online
Don’t miss this opportunity to connect with your Irish USH community!
Register here: registration closed
Closing date: Thursday 15th September
**This event is only open to residents living in Ireland (all 32 counties)**
After registration, you will receive a confirmation email containing additional information. Please check your spam folder if this is not in your inbox. Any queries, send us a message.
Guest Speakers:
Jacqueline Turner
Jacqueline Turner
Jacqueline Turner
Jacqueline Turner is a Genetic Counsellor, who is well known in the Irish rare disease community working as a genetic counsellor for over 25 years. She has seen many families affected with a range of genetic conditions including Usher syndrome.
Dr Mark Pennesi
Jacqueline Turner
Jacqueline Turner
A Professor in Ophthalmology at the Oregon Health & Science University (OHSU) and Chief of the Ophthalmic Genetics Division at the Casey Eye Institute. At the highly regarded OHSU, he is one of many researchers who are working hard to find breakthroughs to end blindness caused by IRDs including Usher syndrome. Most notably, in 2020 Dr. Pennesi led a team in the BRILLIANCE study, to perform the first ever gene-editing (CRISPR-Cas9) procedure on a living human for LCA Type 10, an inherited condition causing sight loss with some promising early results
Derek Lacey
Jacqueline Turner
Derek Lacey
Derek Lacey, ISHAA President, Derek is the President of ISHAA (Irish Society of Hearing Aids Audiologists) and has worked with many people with Usher syndrome over many years. He is joining our event to answer questions about hearing aids and cochlear implants, and the importance of choosing what is best for you.