Quite a bit has been going on in regards to the CTX meeting on July 1st. I have a bit of news that Angie and I feel pretty good about. During all of our communications about the upcoming meeting, we have had conversations with many individuals, patients, physicians, etc.

About 4 weeks ago, we were contacted by Paula Brazeal of the ULF. She told us that she really liked the efforts that we were putting forth around CTX. This led to Paula extending an invitation for Angie and me to come to Sycamore, Illinois the home of the ULF. The purpose of the visit would be to attend a ULF board meeting, meet the board members and to extend an offering to us for positions on the ULF board of directors.

After we sat through the annual report of the organization and met Paula, Ron, and the rest of the board members, we felt that it would be an injustice to the small group of CTX individuals to not join the ULF. We feel that being able to leverage the resources and receive the support that they have offered for the benefit of the CTX group would help us achieve some of our goals immediately and to also become involved in something much larger. It was these things that made it an easy decision to accept a position on the ULF board.

We learned how much the ULF has accomplished in the area of Leukodystrophies and witnessed how extremely well run an organization it is. We feel that the ULF is genuine in its support of CTX and the Leukodystrophies as a whole. Our position on the board will help to provide a voice for CTX patients and provide an avenue to be heard by a much larger audience. The network of individuals that the ULF has established would take many years to accomplish and we felt that instead of reinventing the wheel that we should join forces to help realize the goals that we have set forth for the CTX patients.

This position is completely voluntary, that there is no compensation for us as board members. The motivation for joining is that Angie and I truly feel that it is in the best interest of the group.

There is more news that will be revealed at the July 1st meeting, the end result being that the group as a whole will be better off by aligning with the ULF, and we aim to benefit the ULF with our involvement as well.

This also helps clear our agenda of some of the other items that we had targeted for discussion about how we were going to go forward as a group and how we were going to target some of the issues we were facing.

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.