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.