2011 Conference Videos (member only access)

The 2011 1p36 DSA Conference took place in St. Paul Minnesota and was a great success! Twenty seven families attended the 2 ½ day conference that proved to be both a great time for families to connect as well as informative and educational.  This year the conference was organized a little differently than those in the past with families staying together in dorm rooms on the beautiful campus of Bethel University.  Families were able to have all their meals together in the college cafeteria.  All the conference events took place in the college’s conference facilities including a large auditorium known as the Underground where most of the speaker events were conducted.  Here is a short play by play summary of the weekend’s events.

The weekend kicked off with a welcome from the conference organizer Beth Hegney in the Underground and a slide show showcase of children and adults with 1p36 Deletion Syndrome. Then Heather Antoine led everyone in a few fun, get-to-know-you games that made everyone laugh and helped to break the tension of meeting each other for the first time.  Later that evening, there was a bonfire near the lake for families to visit and get to know each other better.

Friday morning began with an emotional and inspiring talk from Barbara Gill, author of Changed by a Child. Barbara read from her book and spoke about topics such as Dreams, Rage, Potential, Fatigue, and Hope which are the titles to the different chapters.  Any parent of a special needs child would benefit from Barbara’s insightful thoughts and glimpses into the complexities that she herself experienced with her son who was born with Down Syndrome. As a wonderful surprise, Barbara gave a copy of her book to 10 lucky families chosen through a drawing of names.

Carolyn Allshouse, Executive Director of Family Voices of Minnesota, spoke next primarily about Medical Home. She explained that the Medical Home is not so much a place as it is a patient and family centered concept that brings together both family and the healthcare professionals to improve outcomes for individuals with special health care needs. She also gave tips on how to get the most out of appointments with doctors and how to find a new primary care doctor or specialist if the one you have isn’t working out. Family Voices has a chapter in almost every state in the U.S.  Visit www.familyvoices.org for more information.

After lunch at the college cafeteria, families were back in the Underground to learn about accessibility in Home Design from Carisa Rassmusen of Accessible Homes LLC.  Carisa educated parents on how to think about accessibility as not just ramps and widened doorways. She talked about lifts, bathroom fixtures, light switches and kitchen cabinetry that can be modified to make it easier for someone with disabilities to live in their home. She also stressed the importance of finding capable contractors that are well versed in making special needs modifications to your home to avoid costly fixes later on.

Later in the afternoon, families crowded into a classroom where it was standing room only to see a presentation from Dr. Scott Winiecki.  Dr. Winiecki is not only a former pediatrician but also the father of Wendy, who has 1p36 Deletion Syndrome.  So his particular insight was very valuable to the attendees and the presentation and discussion was lively and entertaining. This was due partly because Scott is fun and energetic and partly because he inserted adorable pictures of Wendy throughout his PowerPoint presentation!

The rest of the day was devoted to spending time together for the group photo, Balloon Release and Family Dance.  The Balloon Release was in celebration of all those with 1p36 Deletion Syndrome including those no longer with us.  It was quite a sight to see all those blue and green balloons sailing up into the sky.  Directly after the balloon release there was a lot of dancing, laughing and talking at the Family Dance in the Underground complete with our own DJ, disco lights, glow sticks and Hawaiian leis!

On Saturday, the day began with a conversation with Ken Shirtcliff, President of 1p36 DSA, and board Secretary, Carrie Daggett, about 1p36 Deletion Support & Awareness.  During the open discussion time, there was a chance to pass around the microphone to all the families so that they could share a little about themselves and their loved one with 1p36 Deletion Syndrome.

We were very happy to have Dr. Robert Hopkin of Cincinnati Children’s Hospital as our key note speaker for the 2011 1p36 DSA Conference.  Dr. Hopkin gave some insight on how he himself became involved in pediatric genetics and about the clinical approach to diagnosing a child with complex medical conditions such as those that are commonly involved with 1p36 Deletion Syndrome.  He also talked more specifically about 1p36 Deletion Syndrome, its characteristics, how common the syndrome is and how it is diagnosed in the clinical setting.  We were also very fortunate that Dr. Hopkin was willing to come back to the Underground later in the day to do a Question & Answer session with families.

Part of Saturday afternoon was a fun outdoor time for families to enjoy learning about Therapeutic Horseback Riding from Joan Duncanson and take a spin on some adaptive bikes provided by Heather Marx with Bikes for Everybody.  The pictures speak for themselves.  It was a great time and good example of how people with disabilities can take part in activities that would normally seem impossible to do.

Lori Burgess, a speech and language pathologist trained in reflexive integration, spoke to families later in the afternoon about communication strategies based on primary reflexes using a neurosensorimotor reflex integration method.  To learn more about this approach developed by Dr. Svetlana Masgutova, click here.Lori also shared different approaches to developing the best relationship and keys to look for with your local speech and language pathologist in order to get the best for your child.

After two full days of activities and speakers, families were able to relax and visit with each other Saturday evening watching movies and playing games in the common areas of the dorm.

Sunday morning marked the end of a wonderful weekend.  Families said goodbye, promised to see each other at future conferences and headed home.  The 2011 1p36 DSA Conference turned out to be a great success accomplishing the goal of bringing 1p36 Deletion Families together to learn, share and connect.  Thank you to everyone who came and thank you to all the people that helped make it happen!