CMTC-OVM US is a Global Organization with Headquarters in Ohio, USA

2013 Dutch Member Meeting Report

On Saturday November 2, 2013, I had the pleasure of attending the Dutch Annual Member Meeting held in Leusden, NL. I was accompanied to the Netherlands by my granddaughter Ellayna (CMTC-OVM patient), and my two sons Andy (Ellayna’s Dad) and Jamey. Number countries were represented by one important thing in common, CMTC and/or OVMs.

We arrived on Tuesday November 29, and were greeting by Lex at the airport. On Wednesday we made the journey to the University of Maastricht in Maastricht, NL for an appointment with Dr. van Steensel. He evaluated Ellayna and obtained biopsies to begin extensive research to determine a more accurate diagnoses in addition to CMTC.

On Friday evening my family was invited to dinner by the Dutch board. Saturday was filled with vital information related to the structure of the Dutch organization as well as the international organization. I was honored to give a presentation related to the US organization’s structure and growth, as well as how we are connected and interwoven into the international organization.  Of course, Prof. Dr. Maurice van Steensel explained CMTC and the possible overlaps of other vascular malformations, followed by Q&A. As English was the common language spoken, Maurice gave his presentation in English, YAY for me!

Naturally, we could not make that long trip without some sightseeing. We visited the point where Belgium, Germany, and the Netherlands all meet, we have been there a few times now. Antwerp, Belgium was definitely on the itinerary, in addition to the beautiful cities of Maastricht, Amersfoort, Leusden, Rotterdam, Amsterdam, and Heerhugowaard – all located in the Netherlands. During our trip to Amsterdam we learned one very important fact which we will remember in the future… Do not visit Amsterdam during a football game!! That was a level of enthusiasm I have only read about. My most favorite memory of the trip was visiting the Ava Maria Cathedral in Maastricht, and lighting a candle in memory of by beloved husband, Ed. This has become a touching tradition for me, which I hope to continue for years to come.

It was sad to say goodbye on Thursday November 7. I wish to thank the Dutch board and members for their hospitality, and especially to Lex. Our time was short, but the Gallis Gang will return!