I participated in the Lasker/IRRF Initiative on Restoring Vision to the Blind in March 2014. It was a great session of research leaders working on various approaches to restore visual function lost by retinal degenerative disease. The purpose of the meeting was to identify the key issues hampering research progress and to develop innovative proposals to overcome these hurdles and accelerate research. The Initiative prepared a report of its findings that ARVO published as a special edition of its online journal Translation Vision Science and Technology. Itcan be viewed at http://tvstjournal.org/toc/tvst/3/7.
I had the honor and privilege of attending a Lasker/IRRF Initiative’s plenary session on Restoring Vision to the Blind at Janelia Farm last month where Mr. Sanford D. Greenberg delivered an emotional and inspiring story of a time in his life where he lost his vision during his junior year at Columbia University. The prospect of losing vision is absolutely and completely life altering for those affected as well as for those around the individual who has lost partial or complete sight. Mr. Greenberg’s story in his words, reveals the raw emotion of blindness, the fear and angst as well as the compassion and love of those who travel through life alongside us. At the end, there is also a surprise that will speak to aficionados of music and give some deeper insight into someone who has touched untold millions around the globe through their work and music.
This video is documentation of that event sent along for Webvision to share with you and the wider community by John Dowling the Chair of the Lasker/IRRF Initiative, and Janelia Farm who captured the video, the Lasker Foundation, the International Retinal Research Foundation and End Blindness by 2020. We are grateful to Mr. Greenberg for sharing his story and allowing us to help spread his story and mission of ending blindness here on Webvision.
On a personal note: While I have friends who are blind or are going blind, Mr. Greenberg’s talk haunted me the night after I saw it, particularly because of the field of science I am engaged in. Every scientist studying vision and diseases affecting vision should have the opportunity to spend time with those who have lost sight. It is important for people in the sciences to sit down and talk with those affected by the disease they study. I found this out this week after a meeting with a colleague who agreed to speak with a mutual friend who has Usher’s Syndrome. When my colleague stated after the meeting that they had never actually sat down to talk with someone who has the disease that they study, I was initially surprised. This is not uncommon though. As scientists, not just in the vision sciences mind you, we obsess about the details of what we study and are absolutely driven by the work, but do not always look around and talk with people who’s diseases are the subjects of our studies. This is fundamental to the process as it drives home the motivation for the long hours, late nights and frustrations with grant funding. It forces an introspection and helps us to better communicate our work to a wider audience which is critical to science progress and funding.