A group of people standing together posing for the camera.

September 23rd, 2019


As we look back on USHDAY 2019, Usher Syndrome Awareness Day, we reflect on how much was gained in such little time. First started in the US five years ago by the Usher Syndrome Coalition, this day is now celebrated globally on the third last Saturday of September.

Why was this day chosen by the Usher Syndrome Coalition? Usher Syndrome Coalition says “This day falls near the autumnal equinox in the northern hemisphere, marking the start of days that contain more darkness than light – a powerful metaphor for the threat of Usher syndrome and why we “Own the Equinox” each year at this time.”

And this year, it was amazing to see the global efforts for USHDAY, and how far it has reached across the globe, connecting people from USA to Australia, from the United Kingdom to France, from Ireland to the Netherlands.

Another momentous occasion on USHDAY was when our very own trustee and director of research, Carol Brill, attended the inaugural meeting of the Retina International USH-SIG (Usher Syndrome-Special Interest Group) hosted by the Fondation Pour l’Audition in Paris. We are proud that Carol was chosen by Retina International to complete a committee of four people to concentrate the efforts of strengthening the voice of the global Usher syndrome community. Carol is working with Dominique Sturz, (Usher Initiative Austria), Melissa Chaikof, (Usher 1f Collaborative), and Dario Sorgato (NoisyVision ONLUS), with the mission of working towards the provision of up-to-date relevant information about research and about expert research centers for people living with Usher syndrome.

Carol informs us that the inaugural meeting was riveting, energetic and inspiring. Melissa joined the meeting via video conference where, Dr Isabelle Audo, Alice Lapujade, Marie-Jos?e Duran, and Salma Hazgui all shared ideas as to how the USH-SIG group will achieve its mission. A recent newsletter was published by the group, and you can see it here…

RI USH Newsletter – http://www.retina-international.org/what-we-do/ri-ush/ri-ush-updates…