November 19th, 2007

I have a little bit of news to report. First, through some negotiations, the Falk Pharma foundation has agreed to manufacture CDCA through the end of 2008. This means that the deadline regarding access to CDCA that we thought we were facing at the end of this year has been extended and everyone will continue to order CDCA through John Bell & Croyden in London.

I would guess that this deadline is somewhat flexible though as I don’t believe that they will strictly cut off access December 31st but would allow current supplies to be ordered until they are exhausted. I know that Sigma Tau and the FDA are diligently working on their efforts to drive the project forward of manufacturing CDCA and distributing it in the US under a designated CTX treatment label and am confident that it will be up and running before the end of next year. Everyone involved has the best interest of the patients in mind and know the time table. I feel very priviledged to have a team of people working for the health of my child, and all CTX patients in the US.

Mystery Diagnosis continues to run the CTX episode, it was on again last night and also has the following dates coming up for additional airings:

  • Monday, November 26th at 10:00 p.m.
  • Tuesday, November 27th at 1:00 a.m.
  • Saturday, December 1st at 7:00 p.m.
  • Sunday, December 2nd at 2:00 a.m.
Posted in Updates.