From 4th to 10th May, Save Sight Now Europe proudly represented at the Association for Research in Vision and Ophthalmology (ARVO) 2024, engaging with key stakeholders and leaders dedicated to advancing treatments for inherited retinal diseases (IRDs), including Usher syndrome type 1B.

CONNECTIONS: The event was marked by a spirit of connection and collaboration. Notable meetings included discussions with Justin Porcano from Save Sight Now and leaders from the Foundation Fighting Blindness such as Chad Jackson (Ph.D.), Angela Bowman (Ph.D.), Amy Laster (Ph.D.), and Jason Menzo. Also a Catalan organisation,  Fundació Punt de Vista led by Gabriel Mattioli (Ph.D.). All these conversations underscored our shared goals and mutual dedication to combating retinal diseases.

RESEARCH LEADERS: We had the distinct pleasure and honor of gaining insights from leading faculty members such as Jacque Duncan (MD), David Gamm (MD, Ph.D.), Celia Bisbach (Ph.D.), Uwe Wolfrum (Ph.D.), Martha Neuringer (Ph.D.), Katie Chirco (Ph.D.), Mark Pennesi (MD, Ph.D.), Shannon Boye (Ph.D.), David Williams (Ph.D.), Marie Darche, José-Alain Sahel (MD), Serge Picaud (MD), Isabelle Audo (MD, Ph.D.), and Jennifer J. Lentz (Ph.D.). Their presentations were incredibly inspiring, offering a wealth of knowledge and motivation. These distinguished researchers and passionate advocates for IRD are dedicated to finding treatments for those suffering from vision loss or blindness, and their work fuels our collective drive toward a future with effective solutions.

COMPANIES: Furthermore, engaging with pioneering companies like Retinai, Atsena Therapeutics, AAVantgarde Bio, ZipBio, SparingVision, Ocugen, Nanoscope Therapeutics Inc., Endogena Therapeutics Inc., Kiora Pharmaceuticals Inc., Kubota, and Ray Therapeutics, Inc. offered insights into the cutting-edge advancements in cell replacement, vision restoration, and gene therapy.

VISION CONSORTIUM BOOTH: In addition, we were present in the Vision Consortium booth, set up by Karmen Trzupek & Global Genes in collaboration with esteemed partners like Chris and Malinda Marsh from LHON Collective, Eric Hartman from Cure CHM, Krista Vasi from the Usher Syndrome Coalition, Kristin Smedley from Curing Retinal Blindness Foundation, Teresa Steinmann from ADOA Association, and Courtney Coates from Hope in Focus. The Vision Consortium Booth served as a vibrant hub for patient outreach and advocacy, reflecting the unwavering determination of various IRD organizations and the affected individuals and families who work closely with research teams to accelerate treatments. These organizations, driven by a deep understanding of the unique challenges posed by retinal diseases, emphasize that patients and carers are the best judges of effective treatment outcomes. Their proactive efforts are crucial in helping research teams and companies streamline and expedite the development and validation of new therapies, ensuring a collaborative approach toward finding effective solutions.

A BRIGTHER FUTURE: Every meeting and discussion at ARVO 2024 brought us a step closer to a future where vision loss does not steal precious life experiences from those affected by Usher 1B and other IRDs.

In conclusion, ARVO 2024 was a remarkable week for Save Sight Now Europe, marked by invaluable connections, inspiring insights, and a collective commitment to advancing treatments for inherited retinal diseases. Each interaction brought us closer to a future where vision loss no longer diminishes the lives of those affected by Usher syndrome type 1B and other IRDs. We extend our deepest gratitude to the researchers, clinicians, advocates, and partnering organizations whose unwavering dedication lights the path to a brighter and more hopeful future.