CMTC-OVM Member Conference USA 2008

During the afternoon of 12 July Lex organized a CMTC meeting for American members in the hotel and conference center where the Genetic Alliance meeting was being held.

16 people from various states attended. One of our members had even flown in from California. Other members had in some cases spent many hours driving to the meeting. Lex brought “stroopwafels” (sweet Dutch biscuits) and Dutch calendars for all the families. It was great fun and motivating to see familiar faces and meet new members.

There was a presentation on the history of CMTC and expectations for the future. The presentation is available in the members section of our website.

Here are a few points from the presentation:

1. We have to consider how to establish an American chapter of CMTC with the Dutch organization as a parent. This has legal, tax and financial ramifications.
2. A major goal is the financial and personal support of American CMTC patients and their families.
3. Lex has asked everyone to think about fundraising. Anyone with proposals should please contact Lex.
4. Improving the awareness of CMTC is an important activity where our members can make a major contribution.

After the presentation there was plenty of time to talk. Here are a few topics that were discussed:

1. CMTC, Klippel-Trenaunay and Sturge-Weber are related conditions in that vascular anomalies are common. Some patients have a combination of two of these disorders in which one can be more dominant than the other.
2. Members are advised to check www.hemisupport.com.
3. In some cases regular ultrasound is recommended to check the liver size and the size and symmetry of the kidneys.