December 17th, 2004

We got some bad news today. Due to changes in international drug import regulations, Rare Disease Therapeutics, the company in Tennessee that has been providing the medication for Dr. Salen’s study is no longer able to provide the medication to us for the study. This will bring a close to the study and is another roadblock in getting fda approval for CDCA as a treatment for CTX.

We are now to begin getting the medication directly from Internationale Ludwigs-Apotheke, the pharmacy in Germany that distributes CDCA to the United States. Thankfully we don’t have to travel to do this, we only need to send the prescription to the pharmacy and the credit card info to order the medication. This is a small bump in the road, maybe it’s time to learn German 🙂

Ashley continues to gain weight and is looking better than she ever has.

August 2004

We noticed that Ashley is putting on weight, to us this is a good sign, in retrospective, she was thinner than she should have been, she is now getting much of the nutrients that she was previously lacking. This is a positive sign.


June 2004

Ashley had cataract surgery and is seeing better than she has in a long time, she makes comments as to how clear her vision is. We are very happy with the results. Dr. Bock is the man.

May 2004

Ashley begins CDCA(Chenodeoxycholic Acid) therapy. We are anxious to see the results.


April 2004

Ashley was diagnosed with Cerebrotendinous Xanthomatosis, see the story leading up to diagnosis here. After a lot of searching on the internet for support groups or just people who know about CTX, I put the right combination of search words to find a yahoo health group formed by an individual who’s wife has CTX. There are 3 members now to give you an idea of the obscurity of this disease. You can find it here.