Now we may have greater knowledge about Achromatopsia than many PHYSICIANS, but very few of us have a deep understanding of scientific terms, definitions, and processes.
Here's where the Achromatopsia Convention will come in handy: Some of the researchers who will be voluntarily speaking will put things in layman's terms. We may not be looking into their career, but having an understanding of what they are doing may help us return the favor.
There has to be a bridge built between those who deal with Achromatopsia on a daily basis and those interested in research and development. Just think, what if researchers are missing a key factor, that is abundantly obvious to those with Achromatopsia; and we have no idea that this information is important.
On the other hand, even if a cure is never found, researchers will have the tools to create useful aids. They just need to hear from us and possibly take samples for advanced testings.
Just think of the greater opportunities both sides will gain through understanding each other.
2 comments:
I am so looking forward to attending this conference that I am actually going to wish August was here already. My son has Achromatopsia and to my knowledge no one in my family nor my husband has or had this condition. I would love to join your group I run a group here in NYC for parents with children visually impaired or blind. www.nyc-napvi.org.
I am really impressed by the results obtained recently on gene therapy of achromatopsia. This is a very good news, and I am very grateful to these scientists. However, I read that these results were obtained on YOUNG animals. My question is : will such a therapy be efficient for older achromats ? Is it possible for a 30 year old brain to understand at least a piece of the new information provided by cones ? AD, France
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