CMTC-OVM Member Conference USA 2010

On 17 July 2010 we again held our meeting in Washington DC, primarily for members from the USA and Canada.

The number of attendees this time included 33 adults and 29 children. A nice turnout increases considerably each year.

Lex brought not only “stroopwafels” (sweet Dutch biscuits) and “drop” (liquorice), but also many orange Dutch football articles like “Roar” tee shirts. These shirts are unique and really hilarious!

Prof. dr. Oranje came to Washington especially to offer free diagnoses as well as to participate in our meeting. He arrived Friday evening and flew back on Sunday. This was a difficult undertaking, which was much appreciated by patients and families alike!

In addition to his presentation and answering questions, Doctor Orange also performed 17 diagnoses!

We thank Prof. dr. Oranje for his tremendous dedication and contribution!

The meeting started at 1:00 PM with a short presentation by the chairman, Lex van der Heijden.

Steve Groft, Director Office of Rare Diseases at the National Institutes of Health, was the next to speak.

Finally, it was Doctor Orange’s turn to give a general presentation about CMTC and then answer all kinds of questions.

Around 4:00 PM, the presentations ended and it was time for a snack and drink to get better acquainted with each other and discuss personal experiences.

One of our members filmed everything and will post the various sessions as separate videos on our website. In the interest of privacy, these videos will be available in the member’s section of the website.

Given the growth of our organization in the USA, it is now time to begin working seriously on a U.S. branch of our Dutch organization. Several people have already expressed interest.

Steve Groft also indicated his willingness to help.

At present, the meeting is scheduled for a half-day, but a poll indicated that members would prefer a full day because many people have to travel great distances in order to attend.

Preparing and organizing a whole day in conjunction with the Genetic Alliance conference is unfortunately not possible. Another problem is that attendance at the Genetic Alliance conference would be reduced by about half.

It seems best to organize the Genetic Alliance and CMTC-OVM USA conferences separately. This does incur additional costs and represents an additional burden for the organizers since they have to travel to the USA again; but financially it is feasible. However, this will need to be reviewed on an annual basis.
One suggestion is for groups to organize using Facebook, since numerous members already use this medium to share information so that even more information can be exchanged.