2017-rareday-texas

II Annual Houston Rare Disease Day

By Karen Baer, Mowat-Wilson Syndrome Foundation Secretary

Houston celebrated its Second Annual Rare Disease Day Event on Saturday, February 25, 2017 at the United Way Building near downtown Houston. This was the second year for The Mowat-Wilson Syndrome Foundation to participate. Karen Baer, Secretary of the Mowat-Wilson Syndrome Foundation, her husband, Michael, and niece, Stephanie Holleran manned the exhibit and answered questions for four hours. The venue provided a great opportunity to network with other people working in non-profit organizations for rare diseases. Medical students, genetic counselors, families with special needs kids and the general public attended the event. The Baylor College of Medicine Department of Genetics and the Genetics Department of Texas Childrens’ Hospital provided two lectures to interested parties during the course of the event. The event was very well attended.

Many people stopped to ask questions about MWS and how it affects our kids.We had handouts about MWS and also about our new Patient Registry. Along with a poster board of generic facts about MWS, there was also a picture board depicting “Addison’s Story.” So many of the parents that stopped to chat could identify with our kids!!

There was a door prize awarded to a lucky person who completed the scavenger hunt questionnaire and was drawn as the winner. The question we provided was “What is the gene that is responsible for the symptoms associated with MWS?” Answer: ZEB2 (of course we know that!) But now so does everyone who came to check us out! How? Because we had this huge ZEBRA in our display!!

I did learn a lesson from doing this for the second year—Last year we had hundreds (ok, I’m exaggerating, but it seemed like it) Lindt chocolate truffles for guests to partake when they came to see us. Since we were at the end of the line last year, everyone had eaten too much candy already (from the other tables), so I had a lot to bring home. And, you guessed it—I finished every last one! So, this year, no candy at our table. We did sparkly clothespins to catch everyone’s eye. And I haven’t had to eat one yet! It’s a pleasure serving you all on the board. Raising awareness of MWS is one of our missions and I believe that participating in this event helped to fulfill this goal.