Welcome to the 10th Biennial Robinow Syndrome Convention

2010 Convention will be in Branson, Missouri
August 5, 6, 7, 8th

We are pleased you are joining us this year in Branson, Missouri. We have many families attending, new and returning! We look forward to renewing friendships and making new connections with our new members.

We hope your journey will be inspirational and your memories will last a lifetime. May you leave our convention with the comfort of knowing that you are not alone. We are all part of this “extended family” and we all support each other. May the next two years pass by quickly . . . until we can meet again in 2012.
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BACKGROUND The Robinow Syndrome Foundation and its Biennial Convention
The Robinow Syndrome Foundation was established in the early 1990’s by the parents of a child with the diagnosis of Recessive Robinow Syndrome. The group became a non-profit organization in 2002. The Foundation’s main goal is to provide education and support to patients and their families, primarily through biennial conventions and their website. The Robinow Syndrome Foundation has planned "conventions" every other year where families can meet, socialize and share useful information and experiences. Over the last sev- eral years, there has been increasing participation from researchers and medical professionals. Prior “gather- ings/conventions” have been held in Findlay, OH (1992), Tucson, AZ (1993), Mt. Lemmon, AZ (1994), Andover, MN (1993, 1995, 1997, 2002, 2008), Tucson, AZ (1996), Lee’s Summit, MO (1999), Shell Knob, MO (2000), Hurley, NY (2004), and Dayton Ohio (2006).

TO ALL OF US: We are grateful to be THE FOUNDATION: To share To learn To teach To celebrate our existence!For the 2010 meeting, we will maintain unstructured time for the families to meet and share experiences and socialize.

CONFERENCE VENUE
The 2010 Robinow Syndrome Foundation Convention will be held at the Comfort Inn -Thousand Hills in Branson, Missouri. The Comfort in is in downtown Branson, 45 miles south of Springfield-Branson National Airport and blocks away from a vast of Branson Entertainment. The conference facilities include a conference room for presentation by the Robinow Syndrome Foundation and Juliana Mazzeu. As well as individual consultations with Juliana.
The rooms appear comfortable and there are adequate common areas, including a large indoor pool and outdoor deck and grassy area for socialization. Other amenities include wireless internet, daily breakfast.

CLINICAL REVIEW/SUMMARY: In 1969, Meinhard Robinow and colleagues described a human syndrome characterized by short stature, mesomelic limb shortening, hypertolerism, mandibular hypoplasia, irregular dental alignment and hypoplastic external genitalia1. Based on the initial pedigree, Robinow syndrome was recognized as an autosomal dominant inherited syndrome [MIM 180700] with high penetrance. Over 100 patients with Robinow syndrome have since been identified in families with both auto-somal dominant and autosomal recessive inheritance patterns2.
The goal of our ongoing research is to continue looking for the autosomal dominant gene. We are continuing to follow up with our families to continue keeping current data that is helpful to learning more about the syndrome. Participation is voluntary.

We look forward to seeing you all very soon!