2012 conference Videos (must login to view videos)

This years conference was held in beautiful Gatlinburg, Tennessee at the foot of the Smokey Mountains and it was graciously hosted by Vicie Motz, mom to Hunter, 9 years old with 1p36 Deletion Syndrome. We had a record number of attendees at the 2012 1p36 DSA conference held in July. Not only were the 250 attendees made up of persons with 1p36 Deletion Syndrome and their immediate families but there were also grandparents, aunts, uncles, cousins, and friends!  We know that we have an amazing 1p36 family network but to see it in action and in person was a wonderful sight!

Once again this years conference was packed with a lot of things to do. Along with wonderful speakers, we also had free time and events where old and new friends in the 1p36 community could spend time together talking and leaning about each others loved ones with 1p36 Deletion Syndrome.

Thursday night kicked off with registration and welcomes from the conference organizer Vicie Motz and 1p36 DSA board member Carrie Daggett.  Families had a chance to introduce themselves and their child with 1p36 Deletion Syndrome. Vicie then showed a video slideshow of children and adults with 1p36 Deletion Syndrome that included a memorial to some of the children that we have lost.

Friday was a very busy day with a full agenda.  There were several speakers who covered topics that included research on 1p36 Deletion Syndrome, the genetic clinic experience and how to navigate the education system. There was also plenty of fun as the moms (and grandmothers and aunts!) got to have a couple of hours in the afternoon for socializing with appetizers and drinks before a big family party in the evening complete with a barbeque dinner, a live band, dancing, bubbles and glow sticks!

Saturday was another busy day with speakers and discussions on assistive technology, grief and taking care of the caregiver.  We also had the opportunity to hear from Callie Hoots, a young woman with 1p36 Deletion Syndrome and one of the best advocates for all people with the syndrome.  In the afternoon, families gathered outside with Vicie Motz for a memorial butterfly release to honor and remember the children and adults that we have lost.

Later a group photo was taken that took some amazing organizing considering the size of the group, but with a lot of patience and good humour, we made it happen!  The dads got their chance to ‘bond’ that afternoon when they took a tour through the Ole Smoky Moonshine Distillery and had a chance to sample real Tennessee Moonshine.

All good things come to an end and, on Sunday, families gathered in the hotel lobby to say goodbye.  It was a truly wonderful conference and 1p36 DSA would like to say thank you to all the volunteers that helped to make it happen, to the speakers who donated their time and knowledge and to all the families that came to make our time together a success.