2012 Annual Conference Report
The Global CMTC-OVM US Conference was held on July 14, 2012, in Washington DC. There were 64 participants in attendance representing 11 states and 3 countries, USA – Netherlands – Canada.
The general session was opened by the CMTC-OVM US President Becky Gallis. This was the first annual conference she had attended without her husband, Rev. Dr. Ed Gallis. In a board meeting prior to Ed’s passing away in March, 2012, the role of president was transferred to his wife, Becky. During her presentation she shared the mission and structure of the US organization. This presentation was followed with a report from the organization’s treasurer, Tabatha Broussard, and the fundraising chairperson, Andrea West. Lex van der Heijden also presented the operations of the Dutch organization located in Leusden, Netherlands.
Prof. Dr. Maurice van Steensel presented a dynamic overview of CMTC and Other Vascular Malformations, with time to answer questions from the participating members. In addition, he performed clinical evaluations to those participants interested in this option.
Also present at the conference was Steve Groft, director at the office of Rare Diseases located at the National Institute of Health (NIH). Steve defined the research of rare diseases and how it is affecting the pharmaceutical industry. His presentation was also followed with questions from the members.
This year was the first time we had the opportunity for two patients to share their experiences of coping with their diagnosis. Katie, a member from Canada, and Fiona, our secretary and board member from the Netherlands. The personal stories of these two young ladies provided hope and encouragement to patients as they raise their children with a rare condition. They were both an inspiration, as they discussed how their medical journey has not stopped them from leading fulfilling lives.
In closing, this conference was a success. Although diagnoses were confirmed, there were those that received a new diagnosis, creating the need for a new strategy regarding the medical journey for some families. Together, we are strong and can offer a united support system for our members.