Please join us for the 2013 Member Meeting/Conference.  This year's conference will be held July 6, 2013 in St. Louis, Missouri. We will be staying at the beautiful St. Louis Union Station – A Double Tree by Hilton Hotel.  The organization has been given a group rate of $89.00/night for a single, double, triple, or quad room. These rates will apply for the dates of: July 3, 2013 – July 9, 2013. Visit the hotel's website at St. Louis Union Station - a DoubleTree by Hilton Hotel and take a look around.  A link will be provided here on our website, where you may make your reservations with the hotel.

Prof. Dr. Maurice van Steensel, professor of genetic dermatology with a PhD in molecular genetics, will be joining us again this year.  His specialties include: genetic skin disorders, rare diseases, molecular biology, research project management, and general dermatology.  He will provide free medical evaluations; in addition, he will give a presentation during the general session covering the most up-to-date medical advances of CMTC/OVM, as well as conducting a question and answer session.

An addition to our agenda this year will be a presentation regarding psychological issues, familial issues related to rare syndromes.  This will be presented by Brandy James MA, MS (Makenna Caroline's Mommy).  Brandy is the State Director PHF Disability Program and Coordinator NIA Association in Clarksville, TN.  Her presentation will be an excellent, informative element to our conference.

We will be offering an entertainment space for our children again this year.  However, to ease the concerns of our parents, this space will be within our general meeting room.  We will utilize a partitioning wall to give separation, yet allowing parents to monitor their children as well.

We also would like to plan a trip to the zoo for all that can attend. We will be placing a poll on Facebook on whether Friday or Sunday is best. Admission to the St. Louis Zoo is free. There are various attractions inside the zoo that have small charges. For example, entrance to the children's zoo is $4 per person."  Please visit their website:

Finally, the Gallis' have chosen to offer a scholarship in memory of Grandpa Ed.  The Rev. Dr. Edward Gallis Memorial Scholarship will be given to assist a family with expenses to attend the annual conference.  Details will be provided soon as to how to apply, and the criteria to be considered.

Annual membership fees are required for conference participation.  Registration for the conference will be available here in the coming days! 


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