August 13th, 2005

Tom, a member of the yahoo group made a posting today about an article he had come across in the Journal and Courier, a paper out of Lafayette, Indiana. The article is written by Kevin Cullen and is about a family in Lafayette that has a Son with CTX. The article is from June 2003 and details the trouble that a family had with getting the medication. They ended up contacting their congressmen who got Vice President Dick Cheney involved. It wasn’t long before they were getting their medication again.

Through the power of the internet, I managed to contact the Father in the article and asked him if he was aware of the issues that we’ve been going through. He said he was and was fully supportive of our efforts in tracking down a source for the medication. He signed up on the Yahoo board as well.

Here’s a list of folks that we’ve contacted over the last week in regards to obtaining the medication

Janet at the ULF – Including registering ourselves as family to contact
Jim Bona at the FDA
Bo Allen at Rare Disease Therapeutics
Kevin Cullen at Journal and Courier
Ken Setchell(A Dr. at Cincinnati Children’s Hospital Center who
recently diagnosed 3 siblings with CTX)
Dr. Connor at Oregon Health Sciences University
Dr. Salen
Dr. George Anadiotis(Our genetic specialist)
Our local newspaper
The Vice President
60 Minutes
The Oprah Winfrey Show
Dr. Phil
Our state reps.

We haven’t heard anything back yet but hope to soon.

Posted in Updates.