On September 21st, Usher Syndrome Ireland was delighted to welcome families, teens, parents, and supporters of the USH community to the second annual USH Connect in Dublin. The day was filled with connection, information, and celebration, with insightful and inspiring keynote presentations in the morning and a relaxed afternoon of diverse activities—from Tai Chi and an exclusive IUNVA tour to specialised sessions like USH Parents Connect and USH Teens Connect—ensuring something meaningful for everyone.
The lively raffle, featuring exciting prizes like a hotel stay, brought additional excitement and support; we would like to express our thanks to everyone who purchased tickets.
Held on International Usher Syndrome Awareness Day, USH Connect 2024 prioritised accessibility with ISL interpreters, tactile sign language, and captioning, both on-screen and on personal devices, creating an inclusive space for all. We extend our gratitude to these exceptional accessibility providers for their vital contributions to making the day truly inclusive.
A heartfelt thank you to our keynote speakers for sharing their time, expertise, and personal insights at USH Connect 2024:
The day began with an engaging presentation by Jacqueline Turner, Senior Genetic Counsellor at the Mater Hospital. Jacqueline offered an engaging overview of Usher syndrome, including insights into the genotype of the Irish Usher population, the latest updates in USH research, and more.
Our next presentation featured Dr. Conan Donnelly from Connect Research, recently appointed by Usher Syndrome Ireland to conduct a scoping project on the feasibility of a patient registry for Usher syndrome in Ireland. Joined by his colleague Dr. Jackie Boylan, Dr. Donnelly discussed the critical role a dedicated Usher syndrome patient registry could play and highlighted the challenges currently faced by the USH community in its absence.
Have Your Say. Connect Research invites feedback from the USH community on data needs: Complete the Survey Here
We were thrilled to welcome Dr. Solomon Kamal-Uddin from the UK, who joined us via Zoom. Drawing from his personal experiences and his expertise as a senior pediatric consultant involved in designing and recruiting for clinical trials on rare diseases, Dr. Kamal-Uddin shared insights into the often lengthy journey to a rare disease diagnosis and the complex challenges of navigating healthcare that follow.
Our youngest speaker, Kidist, delivered a captivating presentation titled "My Real Life with USH." Her speech received high praise, with many attendees describing her as remarkable and uplifting. She spoke honestly about her life and the challenges of being a teenager with Usher syndrome, delivering an engaging, heartfelt, and truly inspiring talk. To conclude, Kidist shared a video from the recent USHthis camp, showcasing the incredible experiences teens with USH enjoyed at the event in the UK, hosted by Usher Kids UK and Ava's Voice.
Carol Brill returned to the stage to officially launch our new USH Awareness Packs, designed to equip healthcare professionals with the knowledge needed to better understand and support patients with Usher syndrome.
This initiative was made possible through the 2023 #RareIs grant, a programme by Amgen. Jon Barbour from Amgen joined us for the launch, delivering a speech on the importance of raising awareness within the rare disease community. He shared the motivations behind Amgen’s #RareIs grant, which aims to support nonprofits in their advocacy efforts.
Find more information on these awareness packs here.
To access the transcripts of the morning presentations, please choose your preferred format for download: Word or PDF
We extend our deepest thanks to the generous supporters and sponsors of USH Connect 2024. The contributions of the following organisations and individuals were crucial to making this inspiring event a reality.
We would also like to express our heartfelt thanks to the many volunteers who dedicated their time and effort on the day. This event would not have been possible without their invaluable support.
Your donation will help us create more inclusive, informative, and inspiring events that bring the Usher syndrome community together.
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