Usher Syndrome Ireland

Your Voice Matters: Help Shape the Future of Usher Syndrome in Ireland We need YOUR voice to guide important research! Usher Syndrome Ireland has enlisted Connect Research Ltd. to conduct a scoping project to assess the need and design of a patient registry for the Usher community in Ireland. This is a crucial first step toward creating a registry that could shape future research and support services to better meet the real needs of those living with Usher syndrome. If you're over 18, please take a few minutes to complete this urgent survey today. Your feedback will help determine not only whether a registry is needed, but also what it should include to truly benefit the community. Survey link: https://lnkd.in/evfixSjX #UsherSyndrome #Survey #UsherSyndromeIreland #Research #PatientRegistry ID: A woman is holding a sign that says 'Your Voice Matters'.

Stay informed and connected on all things Usher-related by joining our mailing list! Our next issue is dropping tomorrow and it’s a packed edition full of exciting updates! Simply subscribe here:   https://lnkd.in/eWGH2Fc9 💚 ID: A woman is sitting on a sofa reading on a small tablet. Caption in image says, "Stay informed and updated. Join our mailing list for monthly updates and all the latest news on Usher syndrome!" #UsherSyndrome #USH #MailingList #Subscribe #USHFam #USHResearch #USHSupport 

With only three days to go, we want to say a huge thank you to our supporters for USH Connect 2024! 🌟 We are incredibly grateful for the generous support of the following organisations and individuals who are helping make USH Connect 2024 a success. Your contributions allow us to host this important event, which brings the Usher community together to connect, learn, and share experiences. Special thanks to:  - National Museum of Ireland - Irish UN Veterans Association - The Anne Sullivan Foundation & Reach Deaf Services – Accessibility & IT Sponsors - Axon Rehab – Event Sponsor - Building Profiles and Systems Ltd. – Event Sponsor - Dunnes Stores – Refreshments Sponsor - Clayton Hotel, Read with Me, Butlers Chocolate, and Insomnia – Raffle Sponsors - And to the many generous individuals who kindly donated prizes to our raffle! 🙏 Thank you for your continued support and dedication to the Usher community. Together, we are making a difference! #UsherSyndrome #USHConnect2024 #TogetherWeCan #USHDay #USHDay2024 #Sponsors #Supporters 

We are beyond delighted to welcome Eugene Lynch to our Board of Directors (Trustees) at Usher Syndrome Ireland. 💚 Eugene, a dedicated father to a teenager with Usher syndrome, joins our board in a voluntary capacity, like all of our directors. His personal journey and experience as a parent brings valuable knowledge and understanding of the challenges and hopes that families in our USH community face every day. Eugene also knows firsthand the importance of raising awareness and advocating for better supports, empowering those living with Usher syndrome to lead fuller lives. Joining our amazing team of six other directors, Eugene’s insights and drive will help Usher Syndrome Ireland continue its mission of building a brighter future for everyone affected by Usher syndrome in Ireland. We’re so excited to have you on board, Eugene – your voice and vision will make a REAL difference! #UsherSyndrome #UsherSyndromeIreland #TogetherWeCan #NewDirector #Volunteer #Trustee #Welcome ID: A headshot of Eugene looking at the camera. Behind him, there is a small boat in the water. Caption reads, Welcome Eugene.

As September begins, it’s time to organise diaries for the winter session. Usher Syndrome Ireland is excited to announce our second session of USH Parents Support Group will take place online on Wednesday, September 11th at 8pm. These session are designed specifically for parents of children, teens, and young adults living with Usher syndrome. In our next meeting, we will focus on helping your child/teen transition smoothly into the new school/college year, while exploring ways to strengthen communication skills—particularly how to ensure your child's needs are understood and supported. This is a safe, supportive space where everyone is encouraged to share their experiences and learn from one another. Our goal is to create a community where parents can connect, support each other, and share valuable insights. Interested in joining? Please register here: https://lnkd.in/e8xZwJdS This initiative is an expansion of our USH Connect Peer Support programme, proudly funded by the Supporting Parents initiative from the Department of Children, Equality, Disability, Integration, and Youth (DCEDIY). #UsherSyndrome #USHParents #USHConnectParents #USHKids #SupportingParents ID: An image of a smiling woman sitting in a chair waving to her web camera as she participates in an online chat. 

We are so proud and grateful to have been chosen as one of the recipients for the 2024 #RareIs grant 🎉 Thank you Amgen for continuing to support our USH community 💚 #UsherSyndrome

Attending USH Connect 2024? Don’t forget to submit your dietary requirements through the form we emailed you! Letting us know your preferences as soon as possible helps us ensure everyone gets the food they love. 💚 Any queries, please let us know via DM or email us at contact@usherireland.org #UsherSyndrome #USHConnect #USHConnect2024 #LearnAboutUSH #TogetherWeCan #USHDay #USHDay2024 #USHParentsConnect #USHTeensConnect #RareDiseaseIreland ID: Image shows a selection of food. Logo for USH Connect 2024 and a sticker underneath saying, 'To Do'. 

🚨 Last-Minute Sponsorship Opportunity for USH Connect 2024! 🚨 USH Connect 2024 is just around the corner, and we need immediate support from sponsors to help cover essential costs! Your contribution will help us fund catering, IT support, and event materials, ensuring a fantastic experience for all attendees. Time is running out! Don’t miss this chance to support a meaningful cause and gain visibility for your organisation. 📩 Interested? Contact us today at contact@usherireland.org to discuss sponsorship opportunities and make a difference! Thank you for your support in making USH Connect 2024 a success! 💚 #USHConnect2024 #LastMinuteSponsorship #UrgentCall #UsherSyndromeAwareness #UsherSyndrome #Sponsorship #Event #NonProfit ID: A picture of attendees listening attentively to a speaker. Text in image, "USH Connect 2024. Your help is needed. Sponsors Needed.".

📣We are delighted to highlight the following speakers for our morning presentations at USH Connect 2024, on Saturday, 21st September 📣 - Jacqueline Turner, Genetic Counsellor: Update on USH research and live Q&A. - Dr Jackie Boylan & Dr Conan Donnelly: Essential discussion on the need for an Irish patient registry for Usher syndrome.  - Dr Solomon Kamal Uddin: Discussion on the challenges and support available for Rare Disease communities. - Kidist: Sharing her #RealUSHLives story as a teenager with Usher syndrome. - Official Launch: The morning sessions then wraps up with the official launch of the "Are You Usher Aware?" awareness pack for healthcare professionals. After a morning of insightful presentations, the afternoon at USH Connect 2024 offers a chance to unwind, celebrate, and connect with others in a more informal setting. Stay tuned for more details on our engaging afternoon sessions—this is a day you really won’t want to miss! ***Limited tickets remaining*** We have very limited tickets remaining for this event. Don't miss out - secure your tickets ASAP here: https://lnkd.in/eYAzWcuS #USHConnect2024 #UsherSyndrome #USHFamily #USHinResearch #USHDay #USHDay2024 #RareDisease #RareDiseaseIreland

Join Usher Syndrome Ireland as Our New Board Secretary! Are you organised, proactive, and passionate about making a difference? We’re looking for a new dedicated individual to join our team as the Board Secretary. Key Responsibilities: 📌 Liaise with chairperson to prepare the agenda for 5-6 meetings annually (mostly online) 📌 Record and distribute minutes of each board meeting 📌 Assist the chairperson in ensuring compliance with the CRO and CRA 📌 Stay updated on legislative, regulatory, and governance developments What We’re Looking For: 👉🏻Individuals who are passionate and dedicated, and willing to dedicate approx. 6-8 hours per month 👉🏽Experience in the Irish charity sector is a plus, but not essential 👉A personal connection to Usher syndrome would be a wonderful bonus Interested in joining our mission? View our application form for more details: https://lnkd.in/eK49T3pK #UsherSyndrome #RareDisease #RareDiseaseIreland #IrishCharity #Secretary #BoardOfDirectors #Volunteer #VolunteerIreland #IrishNonProfit #Voluntary #DeafBlindAwarenessWeek #DBAW