Thursday, February 25, 2010

Figuring stuff out.

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When I started teleworking, I was suppose to have all this extra time. Before teleworking, I was easily spending more than 12 hours a week commuting and with all "free" this extra time, I was going to be able to start a part time photography business, be more involved with the kids' school and fund raise for Rett Syndrome research, blah, blah, blah, oh yeah, and keep the house clean. In reality, all I have done is ended up working more hours. It's not really what I want to do with my time. Also, there is no question that working at home is a little isolating (I can go for days without leaving the house), so I'm reassessing and making more time to do more things - things like visiting Edda's school.

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Visits to Edda's school are both heartwarming and bittersweet. The all the people who help Edda through her day are kind, loving, patient and determined. These include not only the professional staff, but the kids as well. Up and down the halls, kids were waving hi to Edda. At an assembly, a group of the 4th and 5th graders crowded around her chair and the chairs of the other special needs kids. Of course, it's bittersweet because wouldn't it just be great if she could feed herself and talk and be a regular kindergardener? On that note, new research out of Dr. Bird's group just got posted on the RSRT website. It's an interesting read - MeCP2, the protein that is screwed up by Edda's missing guanine, was previously thought to be a regulating protein, something that turns genes on/off when they are needed. However, it turns out that MeCP2 is found in the brain at much higher levels than other regulating proteins and it's binding in many, many places throughout the genome, not just at targeted genes. According to Dr. Bird, this may make the whole Rett Syndrome problem not as complex as previously believed (although it remains complex enough that it hurt my head when I read Dr. Bird's interview with RSRT). Hooray for science!

1 comment:

Donald said...

I guess it's no surprise really, but Edda looks like Vince here.