The 11th Annual 1p36 Deletion Support & Awareness Conference was held August 3-5 in beautiful downtown Baltimore, Maryland at the historic Lord Baltimore Hotel. Hosts Jennifer and Scott Winiecki were proud to show off their home state by decorating the ballroom in a Maryland theme. Each 1p36 family was assigned to a table with a Baltimore landmark—this was a great way for our 20+ new families to meet “old” families and for everyone to welcome our guests who traveled from the UK and Columbia. Our 1p36 family keeps growing and growing! There were about 300 of us in Baltimore--we got to know each other a little better by doing a 1p36 Family Fun Facts BINGO to start things off. When we finally quieted down, Sr. Rose Marie Jasinski, CBS offered some reflections on what it was like to become part of the 1p36 family and find support through of our daily struggles. Then we enjoyed a slideshow of all the 1p36 kids at the conference (put together by Crystal Miller Johnson) and honored our 1p36 angels with a special slideshow. We were blessed to have 7 “Angel Families” with us to support and love.
Then it was time for some fun. We had a quick walk to the great Port Discovery Children’s Museum, which was ours for the night. Everyone enjoyed pizza and salad and desserts and playing at the museum. The fun continued late into the evening; the Lord Baltimore Hotel was kind enough to give us a room in the basement for “Late Night Group” –a chance to just hang out with other parents and 1p36 kids and talk.
Our own Callie Hoots started us off Friday morning by getting us up and dancing and then gave us an impassioned speech about hard work and not giving up. New families had a chance to learn about 1p36 basics from Dr. Scott Winiecki, who is a pediatrician and 1p36 dad in addition to conference host! The ballroom was packed to hear Drs. Julia O’Connor and Aila Dommestrup from the Neurobehavioral Department of the Kennedy Krieger Institute talk about behavior issues and how to work on them. The morning also included a special session for Angel Families where they worked on a scrapbook that we intend to pass from conference to conference. Rob Lins from Home Medi-Equipment was available in the foyer for families who had questions about mobility equipment. And the Wonderful 1p36 siblings went on an outing to Dave & Busters that included lunch with a cake celebrating them!
After lunch, we listened to Havala McKinney and Nicole Baker of the Baltimore County Infants and Toddlers Program to learn how early intervention can help mobility. Later in the afternoon, we got to do some fun art projects and games with Jody Zinn, an Adapted Physical Education Teacher. Jody also let us play with a number of adapted toys and sports items she brought with her! Our busy day concluded with a trip to Camden Yards to watch the Orioles play the Detroit Tigers. We all wore our conference shirts and were a sea of purple!
Saturday was just as full of fun and learning. The 1p36 siblings got to attend a SibShops workshop hosted by Louise Heck and Dorian Lanni, who are social workers at Kennedy Krieger. (Louise provided unique insight as she is the guardian of her adult disabled sister). We then moved into a lot of great financial and legal information: Sally Stanfield talked to us about the importance of guardianship and Bette Ann Mobley explained the new ABLE accounts.
We enjoyed some lunchtime entertainment—the McHale School of Irish Dance (including conference host Lexi Winiecki) did a few numbers for us and closed with an audience participation dance. It was great to see a lot of 1p36ers get up and try a jig! Later, we heard Elizabeth Bortz of the Prentke Romich Company explain and demonstrate a variety of Assistive Technology communication devices. We were also able to explore the various educational toys brought in by our final speaker, Amy Mangold of Harford County Public Schools. Amy talked to us about how to engage our kids in academic activities despite their limitations. The afternoon finished with a Q& A panel with Dr. Winiecki, Dr. Daryl Scott, and Dr. Robert Hopkin. Dr. Hopkin and Dr. Scott are both geneticists working with 1p36 Deletion Syndrome and we were fortunate to have them travel to Baltimore to answer our questions!
Our conference wrapped up with the announcement that the 12th Annual Conference will be held in Houston, Texas! It was hard to say goodbye, though. Lots of 1p36 families invaded the Inner Harbor in their purple shirts Saturday night and late night group in the Hospitality Room went on into the wee hours as we enjoyed some last time together. Sunday morning the Lord Baltimore Lobby was jam-packed with 1p36 families reluctant to leave each other for another year. We all look forward to next summer in Houston!!