Rare Beyond Compare ... Click here to learn more

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


What Have We Been Doing?

2014 Dutch – International Member Meeting

NORD 2014

2014 Annual Conference and Family Day


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
  • 2014 Dutch – International Conference Report

The 2014 Dutch – International member meeting was held on Saturday, November 15 in Leusden, NL. Representing the CMTC-OVM US organization was your president, Becky Gallis, her sons Andy and Jamey, and granddaughter Ellayna. Becky gave an in depth presentation outlining the US organization, including;

  • Introduction of the board of directors
  • The organizations mission and goals
  • Defined how the US organization is a separate entity
  • Description of the organization’s only funding being through members, donors, and fundraising
  • The necessity of moving the annual conference each year to accommodate our members
  • The US organization’s involvement in other advocacy conferences
  • The building of a new website, and continuation of collaboration with the Dutch – International Organization
  • Why the Gallis’ do what they do; Ellayna’s journey from birth to now

It was nice to visit with Dutch friends whom they have met over the years. The Gallis’ were honored to represent the US organization, and look forward to returning in 2015.

Of course, they could not make this journey without visiting some favorite sites that have become rather special to them. Amsterdam, Amersfoort, Maastricht, and Heerhugowaard were as beautiful as ever.  Once again, the family visited the Ava Maria Cathedral in Maastricht, to light a candle in memory of their beloved husband and father.

On Monday, November 24, the Gallis Gang said farewell, but will return again!