Friday 28 February 2014

Movie Review

Verdict: who knows?

Charlotte's first trip to the cinema was not a great success. I admit, I had high hopes. After reading a few adult Achromat comments about how they loved the movies, I was expecting that she would be enthralled by the size of the screen and the darkness of the surrounding room.

I let her choose the row we sat in. We had row B. Actually, I lie: she wanted to move forward one more row but I drew the line at the second row. I think she wanted the front row because she thought someone might sit in front of her.

She tried looking at the screen with dark glasses on and off, and eventually went for off. She often chooses to wear them at home when she is watching TV. She seemed to see fine but she was completely bored less than half way through. She had one particular character that she liked so she pointed her out to me every time she came on screen.

I guess she just didn't like the movie.

Friday 21 February 2014

Press Clippings

More Achromatopsia in the news today. I am in danger of turning this blog into a clipping service!

Local newspaper article about two sisters living with Achromatopsia. This previous article about one of them is better written and is, to my mind, more interesting.

This week, the BBC featured research into retinal ganglion cells: Drug lets blind eyes see light. It does not refer to Achromatopsia but includes a magnificent picture of the retina.

Friday 14 February 2014

Gene Therapy in The Economist

I always find it exciting when I see an article on gene therapy in The Economist.

Yes, they like to report on new technology early, but they are also not going to risk their reputation on reporting unpromising studies or research.

The article, Gene Therapy: Ingenious, fixing a body's broken genes is becoming possible, published this week, is a general gene therapy article but the first two success cases mentioned are both related to blindness. They don't reference any Achromatopsia gene therapy, but report positive results for choroideremia and Leber’s congenital amaurosis. Additionally, both studies appear to have the same delivery mechanism as would be used for Achromatopsia, although the article is not specific on method used in the first case. (I also like the picture accompanying the article: clever and cute.)

I always feel a surge of optimism when I read these types of articles, I start to believe that there is hope that Charlotte will be a recipient of treatment. I don't know when, or how what difference it might make but I like to know that there are people out there working on this stuff and there is money being found to pay for it. All of my previous hesitation around such a new technology still applies but it is nice to have a little boost once in a while.