7th International Conference on Lowe Syndrome
Bespecktacled little boys were frequently sighted riding up and down the glass elevators at an Atlanta hotel during a June weekend last summer. Many hotel-goers were amused and entertained by our boys during the 7th International Conference on Lowe Syndrome, which was held June 23-25, 2000 at the Renaissance Waverly Hotel in Atlanta, Georgia. Having brought together about 215 parents, children, friends, relatives, and professionals, it was the biggest conference in LSA history. It was an exciting and busy weekend, and by all accounts, a tremendous success.
An unprecedented number of LSA families participated — 49, most of whom brought their children with them. 42 boys and young men with Lowe syndrome attended, along with many of their siblings. Many friends and relatives were also there, including 15 grandparents! About 17 professionals joined us for all or part of the weekend, representing the fields of science, medicine, education, and others.
Unquestionably, this conference was the most diverse, geographically. Those from the United States came from 29 different states. Eight other countries were also represented, including Canada, England, France, Germany, Ireland, Japan, Republic of Singapore, and Scotland. During the opening session, one family from the Republic of Singapore were given a gift in recognition of having traveled the longest distance to attend the conference. In keeping with a tradition begun at the previous conference, Kaye McSpadden gave a brief message of welcome in five different languages (English, French, German, Japanese, and Mandarin).
Trips to Stone Mountain
For the first time ever, optional add-on activities were available for conference-goers who arrived a day early or stayed a day later. On the Thursday night before the conference, participants had the opportunity to board a chartered bus and travel to Stone Mountain Park for an evening of fun, including a ride on the historic train and watching the late-night outdoor laser show. Since this was the first time we’d ever done anything like this, we really had no idea how many people would participate. We were thrilled at the large number — about 60! A great time was had by all. Not only did we have fun, but it was a wonderful way to get to know each other in a more relaxed and social setting than is sometimes possible during the program-packed conference weekend itself. Many thanks go to local Atlanta-area LSA members for chartering the bus, buying the tickets, and bringing blankets to put on the ground during the laser show. What a wonderful and special night it was!
A similar outing took place on Sunday afternoon after the conference. A somewhat smaller group traveled to Stone Mountain to enjoy its many daytime activities.
The Opening Session
The conference got off to a powerful start with the premiere and large-screen showing of the new LSA film, “Reel to Real Boys.” The film was created by Kim Schroerlucke, using video clips that had been donated by many LSA families. The audience was thrilled at the film and everyone was very appreciative of Kim for her wonderful effort. (Note: This film is now available for purchase, along with the previous LSA film, “Let’s Hear It for Our Boys,” on a single videotape.)
LSA Board member Kathy Schroerlucke then masterfully opened the session with words of welcome and introductions. She gave special recognition to many participants, including those who had given financial contributions. Others were recognized as well; for instance, those who were there for the first time were asked to stand up. A touching moment came when Kathy read a list of names of boys who had died since the last conference, as well as those who had been born, leaving many in the audience visibly moved.
Jane Gallery, the newly-elected LSA President, gave a moving tribute to Candy Smith, the previous LSA President who had served two terms (see On the Beam, v.19:2, Summer 2000). Jane also introduced members of the LSA Board of Directors.
The Opening Session concluded with a Parent Panel, with moderator Buz Craven. Panel participants spoke on a variety of topics relating to the day-to-day challenges of having children with Lowe syndrome, at different life stages. Fiona Fisher of Scotland, parent of a 5-year-old, spoke on “The Highs of Lowe’s.” Ted Barrow of Utah, who has a 17-year-old, spoke on “Lowe & Behold: The Teenage Years.” Mickey Martin, one of the original founders of the LSA and parent of 34-year-old Dan, spoke on “Who Turned Out the Lights?”
The Program — Formal and Informal
The formal program, which began late Friday night with a session about Lekotek, continued throughout the weekend to offer many presentations on a variety of helpful and interesting subjects, including the latest in research, medical care, and others. More concurrent sessions were offered than ever before, giving conference-goers the option of choosing those sessions which were more relevant to their lives and interests.
In addition, for the first time, several informal discussion opportunities were offered. On Saturday evening, after the completion of the dinner party, rooms had been set aside for three informal discussion groups: “Kith and Kin” (for grandparents and other relatives), “For Fathers Only,” and “Adulthood in Lowe Syndrome” (for parents of boys who are in their late teens, 20s and 30s). Participants in these groups reported later that they had enjoyed them tremendously and would like to see more opportunities like these at future conferences. Many thanks to Carol Kuhtz for being the facilitator of the “Adulthood” group, to Rod Ankrom for helping with the “Fathers” group, and to everybody in the “Kith & Kin” group for taking care of themselves.
Meals and breaks
As has always been the case at our conferences, we made good use of our meal times and break times to socialize and get to know each other. By and large, the food and service was excellent, and the surroundings were comfortable. The Reception and Registration at the very beginning of the conference was especially exciting as many people were meeting each other for the first time, and others who had met at previous conferences renewed old friendships. The presence of a large bulletin board for photographs, messages, and notices was a helpful addition to the registration area and a focal point for many conversations. However, making sure everyone got properly registered and given the appropriate conference materials and nametags was a challenge!
One new and exciting feature of this conference was a special event planned just for siblings. About 14 children ages 7-14 participated in the 4-hour long “Sibshop” on Saturday. Led by Stacey Reicher, LCSW, and Jackie Haar, LCSW, from the Marcus Institute of Emory University, the Sibshop provided a unique opportunity for brothers and sisters of boys with Lowe syndrome to discuss their shared concerns, interests, and joys in a fun and relaxed, recreational atmosphere. The program included planned activities, games, discussion and a group lunch.
The childcare program was ably organized by Atlanta parent Marie Clark with the assistance of other local families. About two dozen childcare workers were recruited, including some paid childcare professionals from the local area, college students, and volunteers, some of whom were older siblings, friends, and relatives of conference participants. Jeff and Marie Clark, along with Tina and David Ervin and others, arranged for the delivery of supplies and three rooms full of toys and other play equipment. Childcare was made available during all the formal sessions, and parents felt assured their children were in safe and capable hands during this time. And, (most of the time) lots of fun was had as well! Many thanks to Marie and everyone who worked so hard to assure a high-quality childcare program during the weekend.
Saturday night social
After a long day of presentations and discussions on serious and challenging topics, conference goers were ready to relax and have fun on Saturday evening. When we entered the banquet hall that evening, we were greeted to a sumptuous buffet table heavily laden with fun, barbeque style food such as hamburgers and hot dogs. A popcorn machine stood in one corner, and an ice cream sundae bar was nearby. In another corner, volunteers from the local Starlight Foundation sat at a table, equipped with paint and paintbrushes and ready to decorate anyone’s face who was willing to sit still for two minutes.
The performance stage was decked out with festive, colorful balloons, and after everyone had filled their plates, the room was filled with music! We were treated to a concert by Daddy-A-Go-Go, a musical duo of two dads (plus one son) who shared a program of original family and children’s songs done in a rock-music style. With the use of an electric guitar and drums, the singers had many children and adults rockin’ and rollin’ and tapping their feet! Although the music was too loud for some of the little ones, most enjoyed the concert tremendously.
If the food, the popcorn, the ice cream, the face-painting, and the music wasn’t enough to lift spirits, however, we had yet one more treat — a visit from Bugs Bunny and Daffy Duck! The life-size, costumed characters joined the fun, visiting with the kids, dancing, and allowing their photos to be taken. Compliments of the local 6 Flags Over Georgia amusement park, the special visit may have been the highlight of the weekend for many of our young conference participants.
Special thanks go to Lisa Smyrl and others at the Starlight Foundation for supporting and helping to plan this special event. With their support, we were not only able to enjoy the live concert by Daddy-A-Go-Go, but each family was also treated to a free CD! We also appreciate their volunteer face-painters and their help with arranging the visit by Bugs and Daffy.
(Note: If you’re interested in learning more about Daddy-A-Go-Go or would like to order their CDs, you can visit their web site at: www.daddyagogo.com, or contact the LSA for an order form.)
All good things must come to an end, and after such a jam-packed, exciting, and emotional weekend, what can you say? Our closing session was fairly simple. First, we said “thank you” to all those who had made the weekend possible. And there were many to recognize, especially Jeff and Marie Clark, the Atlanta couple who had worked so hard on the local arrangements, and Tina and David Ervin, also of the Atlanta area, who had helped. Others who had made major contributions to the weekend were Kim Schroerlucke, conference photographer, Kathy Schroerlucke, who prepared nametags and other materials, and Kaye McSpadden, program coordinator.
Second, we said “good-bye.” This was not easy to do. Hard to put in words and hard to say the words. So, we did as LSA parent Fiona Fisher had suggested — we sang it. Fiona led us in a moving rendition of “Auld Lang Syne,” in her native Scottish language. A happy and sad song all at the same time, and a fitting way to end the conference. Thank you, Fiona. Till we meet again.
On the Beam, Fall 2000, v.19:3.