Showing posts with label wish list. Show all posts
Showing posts with label wish list. Show all posts

Something to add to my wish list

The eating disorder world really needs something like this. On NPR, I read about a new website serving the autism community, known as the Interactive Autism Network (IAN). This website links researchers studying autism with the sufferers and their families who so desperately need treatment and answers.

Like so many conditions, autism research is hobbled not just by lack of funding but also by a lack of participants in research studies. Without enough participants, studies can't go forward. So two years ago, the Kennedy Krieger Institute in Baltimore partnered with Autism Speaks to create IAN, a research oriented website that contains a database with information on sufferers and their families. And families can mark interest in particular studies, whether online or in person.

And so far the database is paying off. It's helping find participants for a current genetics study based in Chicago by locating people in the surrounding area, resulting in more than 30 families signing up. What's more:

The vast database helped reveal a link between depression in mothers and autism in their children. Researchers had known about high rates of depression among these moms, but thought it might have been a reaction to their child's problems.

But information from IAN showed that "more than half the mothers were diagnosed with depression before they ever had the child with autism," Paul Law, of the Kennedy Krieger Institute and who runs the network, says. That suggests some of the same genes may be involved in both problems.

Brain researcher Helen Tager-Flusberg says it's one of the quickest ways for a researcher to find study participants. "IAN plays this wonderful role of facilitating the connection between researchers and families," she says.

Would it be great if some of the large ED clearinghouse websites had such a database? Where parents and sufferers could go and provide information* and help further research and get better care and treatment?

I'm adding that to my wish list.

*Obviously, proper security is a must, and only researchers with the proper credentials and approvals should be able to access the information.

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Dear Santa...

I've been thinking- I saw a little baby sleeping in one of those car seat carrier things and all I could think was how much I wanted one of those. For me. And some Hagrid-sized person to tote me around everywhere. It would be like fast-forwarding through all the commercials of life. Bored? Take a snooze. Stressed? Stuff a binkie in it.

There are many other things I'd want from Santa (though all things considered, the above would be quite a bit):

  • a kind of wet food my cat actually liked that I could consistently find in the supermarket
  • an unlimited gift card at a bead store
  • a wood-burning stove
  • either straight hair or curly hair, but not Cocker Spaniel hair
  • a pet moose
  • laundry that folded itself
  • laundry that washed itself
  • if not the above two, laundry I didn't have to pay to do
  • no more spam. ever. never ever never.
  • one of those instant hot water things on my kitchen faucet
  • a cure for the common cold.
  • a version of Cap'n Crunch that didn't leave the roof of your mouth shredded
  • more hours in the day
  • the ability to win more than one game of Spider Solitaire in a row
  • a bike with a bell on it

There are the usual requests, like world peace and such, but the big dude already knows about those.

So that's my list. You have five months to work on it. Better get started!

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About Me

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

Drop me a line!

Have any questions or comments about this blog? Feel free to email me at carrie@edbites.com



nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote



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