I will be attending ARVO 2019 shortly, so here is my experience from the 2018 conference that I wrote last year. You can also read this article for more detailed notes on the special interest group the CRF sponsored at ARVO.
The annual meeting of ARVO (the Association for Research in Vision and Ophthalmology) took place in Honolulu, Hawaii from April 28 to May 3, and was attended by over 11,000 researchers and clinicians. The CRF was represented by foundation president Dr. Chris Moen, Randy Wheelock, and Peter Boone. The conference was hosted in the Honolulu convention center which was a beautiful, semi open space.
The conference was divided up into two sections: posters and presentations. In a large exhibit hall more than 1,000 new posters were hung up every day, outlining smaller experiments and studies. The main author of each poster would stand by it for a few hours to answer questions about their work. On the floors above the exhibit hall presentations were given simultaneously in small auditoriums. Each presentation session included 5-6 speakers who presented work for 15 minutes on a given topic. Using the ARVO app was the best way to decide what to attend based on its relevance to the CRF and the patient community.
There was a large amount of research being done which either directly involves Choroideremia or is relevant to its treatment. Researchers presented cell-based therapies as a way of using stem cells to restore vision or protect the remaining healthy retina. These cells can be injected as a suspension or implanted on a thin scaffold as a sheet. Other work focused on gene therapy. This work included ongoing clinical trials as well as basic research to improve the vector or delivery mechanism. Gene therapy is the treatment which is furthest along in development and the interest in it was noticeable. Dr. Robert MacLaren’s presentation on Nightstar’s Phase 1/2 clinical trial in patients with choroideremia needed an overflow room to contain the interest. In addition to cell and gene therapies, others presented work that further described Choroideremia and explored why vision is lost. The science that was presented across the conference was exciting and promising. The awareness of choroideremia continues to grow within the scientific community thanks to the ongoing clinical trials and the work of the CRF.
In addition to exploring the science being presented, the CRF representatives were busy networking. This networking took place in scheduled meetings with companies and current researchers as well as spontaneously in front of posters and after presentations, often with people who had never heard of the CRF. The primary reason the CRF went to ARVO was to interface with these scientists and companies, coming alongside anyone and everyone who can help push the work towards a cure for Choroideremia forward. We provided a patient perspective to the conference, brought researchers together to collaborate, and researched potential projects and researchers to fund.
The CRF was formally involved in 2 events at ARVO. Chris Moen spoke on a panel as a patient and non-profit representative in front of a group of researchers in a Science Communication Training Fellowship. The goal of the fellowship is to increase scientist and ophthalmologist’s community involvement and outreach skills. The researchers had questions such as “What is the best way to deliver a diagnosis to a patient?” As a physician and someone with an eye disease, Chris was uniquely qualified to help bridge that gap. The CRF also organized and hosted a special session to discuss different methods of measuring the effectiveness of a treatment for patients with choroideremia in a clinical trial. The session featured lively discussion weighing the pros and cons of different methods. You can read about the details of that session here.