2013 Annual Conference

2013 Annual Conference Report

The 2013 Global CMTC-OVM US Conference was held on July 6, in St. Louis, Missouri, at the beautiful St. Louis Union Station – A Double Tree by Hilton Hotel.  There were over 60 individuals in attendance from the USA, Canada, and the Netherlands.

The general meeting was opened by our president, Becky Gallis, who shared the organization’s mission, structure, and new scholarship program. The Gallis’ offered a scholarship in memory of “Grandpa Ed.”  The Rev. Dr. Edward Gallis Memorial Scholarship was developed to assist one family with expenses to attend the annual conference.  The family plans to offer the scholarship each year.  Tabatha Broussard, treasurer, delivered a financial report, and Andrea West, our board member organizing fundraising, shared her goals.  Also, Lex van der Heijden, CMTCOVM-NL president, enlightened members of the Dutch and International structure.

Prof. Dr. Maurice van Steensel, professor of genetic dermatology with a PhD in molecular genetics gave a feature presentation in addition to providing clinical evaluations.  As the majority of the attendees were new to the conference, Dr. van Steensel’s evaluations were to confirm diagnoses of other physicians or re-diagnose patients.  During the clinical sessions he provided assessment and evaluations for 14 patients; unfortunately, he re-diagnosed several patients, leading parents back to the investigative stage of their child’s journey.  Although these diagnoses remained in the vascular malformation category, it introduced the concept of learning new, or varied, interventional pathways.

Following lunch, a Missouri Backyard BBQ, members took place in a “brainstorming session.”  This year’s topics included: Communicating with your doctors, medic alert bracelets, and fundraising.  These sessions have proven to be beneficial as people come together and engage in empowering others with informative concepts.

Dr. Millan Patel, Clinical Assistant Professor in the Department of Medical Genetics at the University of British Columbia, provided an informative presentation regarding his genetic research in Canada.  He explained the need for active participants to take part in the possible discovery of the genetic elements of CMTC.

New addition to our agenda, was a presentation given by Brandy James MA, MS, CMTCOVM-US secretary.  Her presentation was regarding psychological issues/familial issues related to dealing with children with rare syndromes.  Brandy is the State Director PHF Disability Program and Coordinator NIA Association in Clarksville, TN.  During her session members laughed, cried, and had the opportunity to share their experiences and receive professional guidance related to their specific issues. She even gave tribute to our past president, Rev. Dr. Edward Gallis, as she led members in singing “Happy Birthday” for him. We plan to continue utilizing Brandy’s professional expertise in future conferences.

Prior to this day of information, we enjoyed a day of fun at the St. Louis Zoo.  As we experienced the pleasant, creative personalities of our members of various ages, we learned that not all the monkeys were confined to their habitats, lol.  It was a joy to watch our special children interact with each other.  We are hopeful to organize a family day each year during our conference weekends.