We set out to drive to Houston at midnight. We had a very good trip and checked into the Marriott at Baylor College of Medicine at 8 a.m. After a couple of hours' rest, Roy and Monique took the little ones to the beach while Megan and I descended to the lobby where a table was set up for those who planned to attend the conference.

Right from the start, it was a warm welcome for everyone. People would check into the hotel and on their way to the elevators they would have to fight the "gauntlet" of LMBBS people who were welcoming them with open arms.

It is there that I first met "Dr. Nico", Dr. Nico Katsanis, from the genetics lab at Johns Hopkins in Maryland. Whatever my expectations were, it was not those of a young (mid thirties) man with a wickedly humorous demeanor. He was not even interested in checking into his room, he immediately started to mingle with us and while talking to me, when I expressed my concern for my other daughters having children, he said: I remember that name, Sabrina. Let me use your cell phone, mine died on the plane. 20 minutes later, after he spoke with his lab, he was able to tell me that Sabrina actually has the newly discovered LMBBS-10 gene, which accounts for about 25% of all the cases. Not only that, armed with this information, certain laboratories will be able to perform a blood test that determines if someone is a carrier! That just made my day and it set the tone for the rest of the conference.

That evening we all converged upon Dr. Lewis's office. He has a lecture hall outside his office, and several small rooms which were set up for sandwiches and drinks for the "meet and greet" part of the conference. It is here that everybody got to know each other. Name tags definitely are a great help! It was great fun and both doctors mingles freely with the rest of us.

On Saturday morning Dr. Lewis and his administrative assistant (I am more apt to call her his goddess) May Basso had provided us with breakfast and Virginia Young brought leis from Hawaii for everybody. At 9 a.m. we sat down in the lecture hall and things could begin. John Weir introduced Dr. Lewis and Dr. Lewis introduced the various speakers. There were a variety of subjects, obesity, speech issues, kidney issues, and genetics. Some subjects were less interesting while others had us riveted to the edge of our seats. Personally I was extremely interested in the nephrologist, who explained what goes wrong in LMBBS kidneys. I had never heard it broken down like that, even though Sabrina recently had a kidney transplant. The only explanation ever given was that her kidneys failed due to LMBBS, well duh!

The speakers on obesity were interesting, but their particular fields of expertise overlapped quite a bit, so there was some redundancy.

Dr. Lewis had allotted each speaker 20 minutes, which was rapidly overrun, so that in the afternoon we had to abolish one of the peer panels.

The speech pathologist explained the mechanics of speech issues, but since there has only been one paper written on speech issues in LMBBS, most of us did not gain much information from her. After all, those of us who have children in speech therapy already know the basics, we just wanted to know the WHY of it all. And that question was never answered. I did offer the assembly at large as subjects for an updated study, should she decide she wants to write a paper on LMBBS speech issues.

Dr. Katsanis is one dynamic speaker! He actually handles the genetic part of the research and I found out that Dr. Lewis sends him the blood samples for the study, his lab processes them, and the results are then shared with Dr. Lewis and his team in Texas. Dr. Nico, as he became affectionately known, knows how to address the lay persons. His presentation was clear, understandable, and infinitely interesting. He laced his presentation with a Powerpoint presentation, often with humorous cartoons pertaining to the subject on which he was speaking.

After a box lunch, we all went back into the conference room for the afternoon session. Drs. Lewis and Katsanis hosted a Q&A session which was well-received by those in attendance.

When the doctors finished, we went on to two separate panel discussions, the first one about weight control and the second one about education issues. Panel members were all either parents of LMBBS children or people with LMBBS. Either way, they all had "been there done that" and it was interesting to hear how others had resolved some of the problems that confront people with LMBBS.


Due to the time overrun, the business meeting was postponed to the evening session. First John and Vickie Weir demonstrated an Apple computer with voice over which is very simple to use and nifty for someone with vision issues.

Then came the business meeting.

First, Virginia Young presented us with a proof copy of the new pamphlet. She is working on an update and wanted everybody's input. Since we are officially out of copies, this is a good time to review, before we find a printer who will produce more for us.

John Weir proposed to the general assembly that we should separate our alliance with the Foundation Fighting Blindness and establish our own organization in order to allow us to associate with other organizations pertaining to issues with LMBBS, such as the kidney foundation. A motion was made and seconded and there were no dissenting votes, so we unanimously established ourselves as the LMBBS Association. The name was also voted upon since some preferred BBS and others LMBBS, but in the end LMBBS was also decided upon unanimously.

John had put together a constitution and bylaws. Every family received a copy and was given some time to go over them. Nominations for board members were taken from the floor and per constitution John Weir was nominated President, Ruth Dameron, Vice President, and Nancy Coleman, Secretary/Treasurer. John then appointed the following: Monique Lamb, Conference Manager - Mary Morris, Web Manager - the Rev. Tom Marker, spokesman, and myself, Claudia Parker, Communications person. As other positions become necessary, John will take volunteers and he will then appoint people to fill those positions. After conclusion of the evening session, a couple of us went to the hotel bar/restaurant to unwind over a drink. I was one of the first there and we sat in a quiet corner. While talking with Tom, Pam and Megan I turned around, to see that our little group had grown to about 15 people or more! We had an awesome time, until we were tossed out at 11:30. What a shame because we had a great time, some of the younger parents finally feeling like they belonged!



On Sunday morning the original steering committee met in the hotel lobby to "debrief". As the conference attendees checked out of the hotel, several of them joined us to give us feedback and to tell us what worked, and what they would like to see at a future conference. Ruth had her laptop with her and she was furiously typing all the comments and suggestion into notes to be used at a later time. Generally speaking, though, there were very few negative comments and most opinions were that it was an awesome conference, one that we will have to do again in the foreseeable future.

We left to take the kids to the beach again and started home around 3 p.m. We arrived home at midnight, exhausted but extremely satisfied about a job well done.

Claudia