September 2nd, 2007

I hope everyone was able to catch the first airing of the Mystery Diagnosis episode. It turned out very well and despite a couple of facts not being quite right and the narrator mispronouncing Dr. Anadiotis’ last name it was as usual, very well put together and told the story well and maintained the impact that we had envisioned. We received an e-mail from an individual at a compounding pharmacy in Washington State offering their services the day after the first airing. This lets us know that people are watching the show and that it is making an impact. We appreciated their reaching out, however we are nearing final discussions of the medication issue and hopefully won’t need their help. We hope that today’s airing and subsequent airings only contribute to the awareness and exposure that this disorder so desperately needs.

Another bit of news, I recently received a phone call from a woman in Oregon who’s son has or soon will be diagnosed with CTX. We are saddened that this happened but also happy to see newly diagnosed cases and one in our home State as well. It happens that she stayed at OHSU the week prior to Ashley’s stay there and that the team of Doctors who observe Ashley are the same team who are diagnosing her son. I presume we will have numerous conversations in the future.

Also a reminder that the second airing of the show happens tonight at 6:00 p.m.

Until the next update…

August 2nd, 2007

The air date for the CTX Mystery Diagnosis episode has changed from August 13th and they have added 2 additional dates and times:

  • Monday, August 27th 10:00 p.m.
  • Tuesday, August 28th 1:00 a.m.
  • Sunday, September 2nd 6:00 p.m.

Remember you can set and e-mail reminder by going here.

Posted in Updates.