August 22nd, 2006

As I promised, here’s my summary of the ULF Annual meeting. Our flight into Chicago was thankfully uneventful, we beat the bad weather by about an hour. Those arriving after us weren’t quite as fortunate, many were delayed several hours, one Doctor, from Germany was in transit for 30 hours straight due to delays, etc.and still managed to give an elegant presentation on MLD progress in Germany despite having arrived in Dekalb and being shuttled straight to the conference center to present his material. Despite the delays, the meetings stayed mostly on schedule and were presented in their entirety.

Everyone stayed at the Best Western where we all stayed for the CTX meeting. The seminars were held at the Southpointe Community Center, which is about 10 minutes from the hotel. The ULF had shuttles running throughout the day between the center and the hotel making it easy to get to the seminars you were interested in and get back to the hotel if you needed a break. The overall meeting was very well organized.

Angie and I learned a lot from the seminars of which the content was very informative; there were meetings on all aspects of Leukodystrophy from pain management, to physical therapy, genetics, to ways to deal with the school system, and seminars covering the different aspects of the other Leukodystrophies. It was great to meet all of the Doctors and the families. We got to meet Mike, one of the first boys, now 27 who was cured of ALD by a bone marrow transplant at age 9. Hearing stories like his gives hope to many people and is a very encouraging example of how people fighting for a cause can make a difference.

We heard many stories from many families and patients. One thing that is common for most of the families as with us is the fight that it took to get a diagnosis. We met several men who had the adult form of ALD, known as AMN, who went through many tests to get a diagnosis. We met a couple of women who were symptomatic carriers of the ALD gene whom had initially received a diagnosis of Multiple Sclerosis. Several of them had started taking a shot that is the one of the prescribed treatments for MS.

Unbeknownst to them, the shot they were taking is treating a disease that they don’t even have and who knows what it can do to a person who doesn’t have MS. We also met two symptomatic ALD women who didn’t get an ALD diagnosis until their sons were diagnosed with AMN. It’s clear that so much more has to be done to educate the medical community not only in CTX but most, if not all of the Leukodystrophies. There were several parents we talked to who were there for the second opinion program to try and get a diagnosis.

Sadly, one couple had to leave before the second opinion to fly home and be with their son who is affected by an undiagnosed Leukodystrophy. Thankfully they were able to leave their films and test results for the doctors to review and hopefully give them something to pursue.

It was an awesome experience to be amongst some of the world leaders in Leukodystrophy research and to be able to talk to any of them during the evening events was something that a price cannot be placed on. Also encouraging was meeting the young doctors who are researching different aspects of Leukodystrophy, these are the ones who will carry the torch when the ones we know now retire from practice. It was a truly great experience. We look forward to the 2007 Symposium and bringing CTX into the fold as an agenda topic.

Angie and I have been told that DVD’s of the CTX meeting are available. The price that we’ve been quoted is $50 for the set of 4 DVD’s that comprise the footage of the meeting. I have been instructed to refer folks to Janet Read at the ULF to place orders for the DVD’s of the meeting.

Discussions continue to occur regarding the sustained supply of CDCA in the US, or if needed outside the US. We don’t have much information to share but things seem to be going in a positive direction. As soon as we have accurate information to post I will provide a report.

Posted in Updates.