Yesterday I attended the Health Department of the State of Oklahoma’s Genetics Family Advisory Committee Meeting. I was invited to become a member when I attended the Genetics Advisory Counsel Meeting a few months back, and was introduced to some of the people who head up the various committees. They didn’t have anyone representing CAH so I was asked if I’d like to become a member.

The meeting consisted of a presentation about PKU, followed by a discussion of various methods of promoting communication from the Health Department to families and vice-versa. The PKU presentation took up the bulk of the meeting time, so the follow up discussion was shorter than intended.

What really surprised me was that in spite of the focus placed on PKU in every state, there’s really not that many avenues of support for families. People with PKU need blood tests every week (usually a finger prick) to determine their levels and adjust their diets. Going off the diet has no immediate repercussions, but after time will begin to produce mental retardation.

The committee member representing PKU had brought her daughter, and answered a few questions. While one of the problems seems to be the lack of support outside the doctro’s office, she knew of no message board for families to communicate, and at one time belonged to a mail list server but the constant squabbling made her drop it. I did a search and could only find one PKU message board, and it was in German.

There are sites that offer info on PKU, but I know from my experience how helpful this and other message boards are.

I’m toying with the idea of beginning one for PKU, under a different domain, and building a site similar to this one, but focused on PKU. I’m sure I can get help from the PKU mom I’ve already met as well as the doctor and nutritionist who spoke at the meeting. If I do I may, then, begin a sort of umbrella site, that would link to both, and perhaps others that I may be able to start. It seems to me that the format of this site can be reproduced for many other conditions, and provide the same help.

I’m hesitant about splitting my focus away from CAH. Sometimes there not much for me to do, but other times I’ll spent several days working on building features or research or data gathering.

I also intend to do research on how to do press releases, since that was one of the focuses in the meeting, getting the media’s attention regarding important issues. Having worked in both Television and Radio I’ll have a bit of an advantage there and should be able to put together a simple how-to sheet on it.