Last week I had the pleasure of attending the Vision of Children Eighth World Symposium on Ocular Albinism in San Diego. Researchers from all over the globe attended and presented their research, most of which is in process. It is unique that researchers of varying backgrounds come together like this and share their research before it is published, and as such, an opportunity we couldn’t pass up.
Although much of what was presented was over my head, I appreciated that there was a wide variety of experts in attendance — everyone from microbiologists working within the cells, to scientists working on whole-animal models, to pediatric ophthalmologists running clinical trials. I learned so much more about albinism and ocular albinism (OA) — from genetics to the way that the different types present in the patients.
The Vision of Children Foundation, founded by Sam and Vivian Hardage twenty two years ago, has done so much to further the understanding of albinism and specifically ocular albinism. When it began there was very little research going on and no treatment or cure in sight. Now there are three clinical trials underway for various forms of oculocutaneous albinism and hopefully that will lead to a potential treatment for OA as well.
I was so inspired by all of the amazing work being done and how passionate all of the researchers are. It was so worthwhile for me to attend to make contacts, learn more about the disease and meet other families. In the coming weeks I will be writing more about what I learned and the things we will be doing. Stay tuned.