A peer support programme to connect you with the people who understand what you are going through
Ever wished you could connect with someone who could understand your thoughts and feelings as you deal with Usher syndrome, in other words, someone who gets it? Then USH Connect may be what you're looking for.
What is USH Connect?
USH Connect is a new USH peer support programme from Usher Syndrome Ireland for those impacted by Usher syndrome, whether as an adult, parent, partner, or a family member, to connect with an USH Peer Supporter who has lived experiences to provide a listening ear to provide emotional and practical support.
How does it work?
The main point of connect will be via confidential email between only the individual and the USH Peer Supporter. In time, we are aiming to host online, via Zoom, USH Peer Support group meetings to provide people with an opportunity to meet with their peers, and have discussions.
If you are interested in becoming an USH Peer Supporter, please reach out to us at firstname.lastname@example.org for more information.
Meet our USH Peer Supporters
🟢 Connect with a Parent/Family USH Peer Supporter
Meet Eugene and Kidist
🟢 Connect with an Adult USH Peer Supporter
🟢 Connect with a Cochlear Implant(CI) USH Peer Supporter
I’m Eugene and I’m the father of Kidist who is Usher T1. Kidist is profoundly deaf from birth, her central vision is quite good but her peripheral vision is beginning to close and her night vision is very poor. Her balance is fair to middling. My wife and I try to enable Kidist as much as possible. We try to find ways for her to do things rather than reasons why she cannot. We are open with her about her Usher’s in an age appropriate way and talk regularly about how she is getting on. Kidist is growing into a very confident and resilient young lady with all the “normal” preoccupations and worries of a regular pre-teen/teen but, at least for the moment, no real worries about her Usher’s.
Hi, my name is Kidist an I am twelve years old. I have Usher Syndrome Type 1. This means that I am profoundly deaf, I can’t see in the dark and I have bad balance. Nevertheless I am a sport person. I enjoy horse ridding, athletics and drama. I love reading and write my own stories, creating a new world full of eccentric characters to immerse myself into. I find it fun because I get to create a fun and interesting life for my characters. Keep an eye out for my name in your local bookshop in a few years! I am multilingual as well. I can speak more than two languages. I speak English, Catalan, Irish, some Spanish and I also use Irish Sign Language.
Eugene has very kindly volunteered to chat with other families dealing with a child/teen receiving an USH diagnosis, and throughout. You can email Eugene by clicking the link below.
Details coming soon
Hi! I'm Deborah, and some of you may already know me as a founder and Director of Usher Syndrome Ireland. After experiencing a progressive hearing loss in both ears in my early 30s, I received two cochlear implants in 2018. I know that many others may be on a similar journey I once was on, and therefore, I understand the need of wanting to reach out to someone similar and ask questions, which is why I'm happy to be a CI USH Peer Supporter for USH Connect.
+353 (89) 262 4696
15 Windsor Terrace,
Dun Laoghaire, Co. Dublin,
Reg. Number: 688621
Reg Charity Number: 20206288
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