2014 Conference Wrap up - LOVE SUPPORT AWARENESS

Videos of the 2014 conference presentations can be found here.

The 8th Annual 1P36 Deletion Support and Awareness Conference took a playful SPLASH in 2014 at The Great Wolf Lodge Water Park in Cincinnati, Ohio!  This year was full of excitement, laughs, and fun right from the beginning!  Throughout each moment you could feel the love, support and hope. Our 1P36 Family grows each year and this year it really showed. The growth is not just in the number of families reached, but with a growing team of Doctors who showed their dedication to new 1P36 Deletion research at the conference. The future of 1P36 DSA is looking very bright and to represent our new strength, our very own super hero came to join our team…Captain Chromosome!

Our time together began on Thursday afternoon by showing some cheerleaders what team spirit truly looks like!  Everyone happily pitched in to set up our space for the weekend after getting a late start.  We did what we do best, support each other and work gracefully under pressure. GO TEAM 1P36!  Each 1P36er at the Conference was celebrated with personalized beach buckets on each table and the infamously witty Winiecki introduction slideshow.  We let each child know how special and important they are right from the beginning!

Dr. Robert Hopkin and Cassandra Bac from the Genetics Department of Cincinnati Children’s Hospital announced the new research studies that they have organized for 1P36 Deletion.  This was incredibly exciting to be able to participate in new research and help children with 1P36 in the future!  Two departments at Cincinnati Children’s Hospital are doing studies to help further understand how 1P36 Deletion effects individuals.  The Speech Department is looking at what the difficulties are with oral-motor activities

The Heart Institute did Echocardiograms and Electrocardiograms on study participants to look at the heart and 1P36 in greater detail.  The results of both of these studies can help to formulate treatments that can improve the lives of individuals with 1P36.  So many took the time to participate in the studies and help further research for 1P36 Deletion Syndrome.

After an introduction to the conference weekend by Ken Shirtcliff, the 1p36 DSA president, families were able to take the balloons that were tied on their child’s beach buckets and walked outside to the Pavilion.  Each balloon was released to the sky with a heartfelt 1P36 Angel Dedication by Shelby’s Mom, Erin.  We watched with teary smiles as the balloons drifted and danced off into the big blue sky.    

The evening ended with a pizza party, dancing, and some goofy fun in the photo booth.  We even had a surprise guest from the Disney movie, Frozen!  Livvy Stubenrauch, the voice of young Anna signed autographs and took pictures with the children...and some adults got in there as well!  The night truly felt like a family reunion where we had time to catch up with old friends and meet new ones.

Friday began early, gathering for a buffet breakfast to start the day together.  Dr. Daryl Scott from Baylor College of Medicine and Texas Children’s Hospital began the talks.  He gave us a genetic overview of 1P36 Deletion and told us about the fabulous research he and his team are continually working on.  They are working to identify which specific genes cause the different characteristics and medical difficulties for those with a deletion in the 1P36 region. It is difficult and challenging research.

With so many of our kids struggling with seizures we were pleased to have Tom Koprowski from the Cincinnati Epilepsy Foundation to talk about seizures.  He gave a complete overview of the different types of seizures and what parts of the brain are effected as well as what parents and caregivers should look for and how to care for our loved ones who are dealing with seizures.

We had the privilege of having Dr. John Jefferies join us. Dr. Jefferies is the Director of Advanced Heart Failure/Cardiomyopathy at The Heart Institute in Cincinnati Childrens Hospital.  He gave us a look at the different issues many individuals with 1P36 Deletion have with their heart, specifically Cardiomyopathy.  Dr. Jefferies showed real images and video of hearts during an echocardiogram where he was able to compare normal heart function and a heart with various challenges due to structural abnormalities.  He discussed treatments that have shown to be successful and talked about risks as well as hope.

The afternoon learning session ended with presentations by Emily Buckley and Karen Rizzo from The Speech Department at Cincinnati Children’s Hospital. They were able to give us great detail about how to help our children with communication and feeding concerns.  They emphasized all of the things that we can do to maximize potential in not just vocalizing, but tailoring a complete plan for communication success.

The evening ended with the Dads getting some male bonding out in the Pavilion with drinks and appetizers. With the help of Shane MacKendrick doing the childcare, the moms were able to spend time together with drinks and desserts. The time together is never long enough, so some carried their time into the late hours of the night…late, late hours...

Saturday morning came quickly and lots of coffee was needed.  After breakfast we jumped into a question and answer segment with Dr. Scott and Dr. Hopkin from Genetics and Dr. Jefferies from Cardiology.  They all answered many tough questions from parents.  It was a wonderful opportunity to have an open dialogue as we try to help improve the lives of our 1P36 children.

Before lunch we were able to hear from Beth Peloquin, an Early Childhood Special Education Consultant in Vermont. Beth has been a longtime supporter of kids with 1p36 Deletion Syndrome as well as all those with disabilities. She has attended other 1p36 DSA conference as a friend of Carrie Daggett and her daughter Kate. Beth helped us learn about how to most successfully navigate through the IEP Process.   

The last of the educational sessions began with Aaron Clow, President and Founder of Beds by George sharing with us how to best keep our children safe as they sleep.  Aaron’s daughter has 1P36 Deletion Syndrome and she was his inspiration to design and build beds to keep children safe as they grow.  Aaron’s entire family joined us at the Conference for their first time.

Our last speaker was Tim Vogt from Starfire Foundation in Cincinnati.  Tim focused on helping us to build lifelong networks of support.  Tim asked us to think about community and how to build full lives for our children and our families in creative and meaningful ways.

We wrapped up the Conference by drawing names to give away some really neat items.  Everyone was eager to be the family that got to take Captain Chromosome home with them! He was clearly the life of the party all throughout the conference!  The 2015 Conference was announced with a fun video…Mickey Mouse gave it away immediately!  And then we were sent on our way to enjoy the water park together!  The Great Wolf Lodge was full of 1P36 families everywhere you turned and it was such a warm feeling.  Late into the night the Sequoia Ballroom was full of our laughter…

Sunday morning came and as we took pictures and gave hugs the buzz was all about getting ready to be together again next year.  The excitement of the countdown begins all over again…