May 1st, 2006

A lot has been going on since the last update. We have finalized a date for the ULF sponsored CTX summit. It is happening on Saturday, July 1st 2006 in Dekalb, Illinois. We have been successful in contacting many CTX families and patients as well as Doctors who are knowledgeable about CTX and in some cases treat patients.

Here are a few names of individuals who are invited:

1- Dr. Gerald Salen – Confirmed as attending

2- Dr. Shailesh Patel- has done research with Salen and others – Confirmed as attending

3- Dr. Vladimir Berginer- he lives in Israel and has about 60 CTX families. He is also the individual who made the original discovery of CDCA’s effectiveness in CTX treatment – Confirmed as attending

4- Dr. Setchell/Bo Allen- Dr. Setchell and Mr. Allen are partnering to form a company to manufacture CDCA in the USA – Not confirmed

5- Dr. William Connor- Dr. Connor is currently at Oregon Health Science University and is beginning a research study on the effects of a low cholesterol diet and it’s effects in preventing the Xanthomas that are a symptom of CTX. His special interest is in atherosclerosis, nutrition and lipid metabolism. – Confirmed as attending

6- Dr. Antonio Federico – Dr. Federico is a full professor of Clinical Neurology and Director of the Department of Neurological and Behavioral Sciences, University of Siena. – Confirmed as attending

7- Dr. William Rizzo – Dr. Rizzo is the head of the biochemical genetics specialty program at University of Nebraska’s Medical Centers Munroe-Meyer Institute. He is a pediatrician from the Medical College of Virginia, where he researched inherited metabolic diseases for almost 20 years. Dr. Rizzo also heads the Section of Inherited Metabolic Diseases in UNMC’s department of pediatrics- Confirmed as attending

We will also have a representative from the FDA in attendance as well. Our little meeting continues to grow as word spreads. We feel we are making a great start to amazing things. We are also thinking of doing a hospitality night Friday June 30, this way we can spend some time getting acquainted.

I will be posting more info as the meeting draws closer.

Posted in Updates.