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Who We Are

We are a nonprofit organization whose activities are aimed at the well-being of people who suffer from vascular malformations such as CMTC (Van Lohuizen Syndrome) and to stimulate the scientific research of such conditions. Objectives of the CMTC-OVM US organization are focused to provide our members with knowledge, medical support that can enhance their confidence and independence, and to empower them with the skills to meet their individual needs.

Coming Up

November 8 – CMTC-OVM US Board Meeting

November 15 – CMTC-OVM Member Meeting, Leusden, NL

November TBA – Fundraising Event, Indiana

December 4 – JRAZZO’S Wine & Dine Fundraiser in Indianapolis, Indiana

January 10 – CMTC-OVM US Board Meeting

February 28, 2015 – Rare Disease Day

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What Have We Been Doing?

NORD 2014

2014 Annual Conference and Family Day

Highlights

Welcome to the new CMTC-OVM US Website!  Take some time to make yourself at home.

Be sure to visit the Board of Directors page and get to know a little about them.

The CMTC-OVM US Organization will be represented at two upcoming conferences; NORD in Washington DC, and the CMTC-OVM Member Meeting in Leusden, The Netherlands.

There are also currently four fundraising events being organized.  Check back to read the event organizers’ reports.

Our activities are aimed at the well-being of people who suffer from vascular malformations like CMTC ('Van Lohuizen syndrome') and to stimulate the scientific research of these afflictions. Become a Member
  • 2013 Dutch – International Conference Report

On Saturday November 2, 2013, I had the pleasure of attending the Dutch/International 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!