What could make a teenage girl donate her baby-sitting money to a conference on a congenital developmental disorder instead of spending it at her local mall? Or pull a busy investment banker from New York City to Saint Paul, Minn., to take his first weekend off in six months to volunteer 16-hour days at the 2001 World Conference on Prader-Willi Syndrome's youth program?

The answer: knowing people like 32-year-old Larry Gardner, who has Prader-Willi Syndrome, a congenital disorder whose characteristics include mental retardation, insatiable appetite and uncontrolled obesity even on a “normal” diet, obsessive behaviors and explosive temperaments, and several physical anomalies. The teenager is the oldest child of the vice president of one of the sponsoring organizations, the banker one of Larry's cousins.

“One of our former neighbors sent a nice letter with a check from themselves and each of their children to help support the conference,” says Larry's mom, Joan Gardner, one of the volunteer conference organizers. “They had never met anyone with PWS before they met Larry. They said knowing him had been a special experience for their family, and they wanted to contribute.”

The conference, which was held June 27 to July 1 at the Radisson Riverfront Hotel in Saint Paul, was the first time the International Prader-Willi Syndrome Organization and the Prader-Willi Syndrome Association of the United States of America had joined to provide five interrelated symposia: the youth and adult activities program (YAAP) for babies, children, and adults with PWS; a scientific conference for physicians and researchers who work with the syndrome; a professional care providers program; an IPWSO parent delegate and USA chapter presidents meeting; and a general conference for parents and professionals. The ARC (a national association for people with mental retardation) also provided a program for siblings of people with PWS.

“When you get that many people with PWS together for three days, there are bound to be some meltdowns. It's a difficult population to program for.”
— Joan Gardner

While the scientific conference brought researchers and scientists together to share results on topics such as growth hormone therapy, and 1,170 attendees from India to Zimbabwe shared coping strategies in the general conference, it was the YAAP program that brought both the biggest challenges — and the biggest rewards.

Lesson #1: Be Prepared

While the U.S. organization was used to running the YAAP program, IPWSO had never done it on this scale before. Just to keep it interesting, everything from registration to housing to scientific content was handled by 400 or so volunteers.

“We had close to 300 people attending the YAAP program, and when you get that many people with PWS together for three days, there are bound to be some meltdowns. It's a difficult population to program for,” says Gardner. To keep things under control, she had 70 volunteers, each of whom were in charge of a group of five kids. For every five groups of five, she also had a group leader trained in PWS and another trained in restraints to act as a behavior assistant.

To cover medical emergencies, Gardner went to the local hospitals and passed out information on the syndrome to the lead emergency room physicians and let them know when the peak days for the conference would be. She also had nurses on site, and two physician-parents on call during the program in case the nurses got in over their heads. Fortunately, very few incidents required medical care, and those weren't acute.

“You have to be prepared,” she says. “This population has an abnormally high pain tolerance, and you don't always know when they're in trouble. Also, because their veins tend to be very small, it can be very difficult to get an IV going. The local physicians need to be made aware of the kinds of special issues people with PWS can have.”

Food, Glorious Food

“For people with Prader-Willi, food is always an issue,” Gardner says, adding that they have an incredible craving for food and never feel satiated. The fight against obesity and food-related health issues is a constant struggle. “You can't just let them go to the bathroom unaccompanied, because they'll head straight to the kitchen and help themselves to whatever they can find.” One attendee went down to the hallway snack bar and insisted that he didn't have Prader-Willi, she says. “The poor girl behind the counter didn't know what to do.” Gardner's husband rounded him up and brought him back to the program.

Gardner's son's godfather, who organizes his Realtor trade association's annual conferences, offered to be the hotel liaison for this meeting. He flew up to Minnesota from his home in Tennessee several times beforehand, and worked 18- to 20-hour days keeping things running smoothly with the hotel.

“I never felt like I was ahead of the curve — never.”
— Joan Gardner

His work paid off: The hotel staff was wonderful in helping to cope with the particular difficulties associated with the syndrome, Gardner says. “They put butcher block paper over the glass counters and the case holding beverages so they couldn't be seen. The gift shop also took out all the candy, because people with PWS are at a developmental level where the atavistic need for food may drive them to try to steal it.” Gardner also went to area convenience stores and explained the syndrome to the stores' managers, adding that they should call the hotel if a patient wandered in, and someone would come and get the patient.

While her Israeli delegates said that the fish and vegetarian meals would be fine to meet their dietary needs, she did have one U.S.-based family that insisted on kosher meals.

“We really tried to bend over backwards to accommodate everybody, but this family was a real challenge,” she says. Since it was being provided by the conference organizers and served at the hotel, the food had to come from a commercial provider because of health department regulations. Of course, the commercial kitchen happened to be on the other side of town. A volunteer came to the rescue and did the meal shuttling.

“The other problem was that the kosher meals were enormous, so the four-year-old who has PWS was eating out of this huge pan full of food, while the other children were getting 300 calories.” In retrospect, she says, she should have deducted the cost of the meals for this family with special dietary needs from their conference fee and let them handle it on their own.

…And Sometimes, the Bear Gets You

“I never felt like I was ahead of the curve — never,” says Gardner. There were omens at the very beginning of the conference, such as when the organizer of the previous conference at the hotel refused to leave the Presidential Suite, which Gardner had reserved for use as an office on Monday. Gardner's goddaughter ended up moving in with her parents, and they used her room as an office until they finally got into the suite at 5 p.m. on Wednesday — right before Gardner had to host a presidents' dinner.

“The hotel, bless their hearts, welcomed us into our office with dozens of bottles of pop, cheese trays, baskets of crackers, all kinds of food,” she says. “I walked in with two minutes to change my clothes before going to the dinner, and I found this table full of food.” So she called her sister down the hall, and they threw it all into a duffel bag and schlepped it down to her room just as the kids who have PWS were arriving for their party.

She also thought they had the translation covered, but, though the rules strictly prohibited last-minute registrations for the YAAP program, “If you're faced with a child from Europe who isn't registered, you take him.” They pulled off finding translators for a Swiss-German child, but then they had to find two more translators for Japanese children who, because one was 17 and the other 4, were in separate programs. She said the Mormon Church was wonderful. “The chair of the PWSA (USA) program next year, which will be held in Utah, called Mormon Church communities in Minnesota, and they managed to find Japanese translators for those kids,” she says with a sigh of relief. Many siblings also filled in as translators.

All presentations for the scientific and general conference were made in English, and non-English-speaking adults not in the YAAP program had to pay for their own translation. But then there was the lady from Paraguay who, while she pre-registered at the hotel, hadn't registered for the program. “The hotel lent us one of their Spanish-speaking employees to help out, and some of the other delegates from South America helped to nurture her through it,” says Gardner.

Keeping Cool

Another potentially huge problem surfaced with the realization that few of the hotel's guest rooms had in-room refrigerators. Many of the young children with PWS are on growth hormones, which need to be refrigerated. “This one was time-consuming,” says Gardner. One of the meeting's supporters, Peapack, N.J.-based Pharmacia Corp., sent ice packs, which the hotel kept in its freezer until they were needed. The company also provided coolers at their exhibit area. Gardner and friends went out and bought more coolers, put the ice packs in them, and made them available at the conference registration desk and at the hotel registration area.

The YAAP program itself went off relatively smoothly. There was a full-day session with carnivals and entertainers at the hotel, and another full-day trip to the nearby Science Museum of Minnesota. A special Saturday night gala banquet and Sunday morning crafts and bingo rounded it out.

But the closing ceremony was the best. “We had a band and a person dressed up as Snoopy come in from the Mall of America's Camp Snoopy to lead a parade of the kids,” says Gardner. “It was fabulous when they played ‘When the Saints Come Marching In’ with Snoopy leading the way and all 200-something of the kids marching along behind them. IPWSO president Giorgio Fornasier said at the end it was really incredible how it all worked out.

“It was tough, but it was enormously rewarding,” says Gardner. “While I didn't know everything we were going to come up against, I knew it was all going to be worthwhile at the opening ceremony, when we showed a video one of the parents had put together of kids and adults with PWS all over the world. Everyone was in tears.”

Tips from the Front Lines

Some tips from Joan Gardner, who helped to organize the 2001 Prader-Willi Syndrome World Conference:

  • Make sure parents don't overwhelm the scientific sessions. “International scientists in this area get this type of opportunity only every three years at best, and we didn't want the parents to disrupt things by asking, ‘What about little Johnny?’” she says. By posting signs outside session doors and handing out a sheet with the rules as parent-observers walked in, she made it clear that they were not to participate.

  • Fill parents in on the scientific sessions at separate sessions presented in lay terms. “We had separate ‘ask the experts’ sessions with key scientists from each field so parents and people with the syndrome could ask questions.”

  • Check ahead of time to make sure the hotel can handle special dietary needs.

  • Set up an on-site system to take care of emergency medical needs, and one to take people to the hospital, if necessary.

  • Inform local emergency room physicians about the special needs and disabilities of your group.

  • Check to see if you have any local contacts with the media if you want to get coverage. “We have a friend who has a morning radio talk show in Minneapolis,” says Gardner. “We told her all about the conference, and she began making calls.” The conference got great publicity on the local TV stations and newspapers. “It really heightened awareness of PWS in Minnesota,” she says. “We found some families we didn't know about before, and others we had lost track of got back in touch after hearing about the conference.”

  • Educate the hotel staff about the special needs of your patient population, and work with them to resolve any issues.

  • Ask at the precon meeting about accommodating the special needs of your attendees, whether it's special boxed low-fat breakfasts or in-room refrigerators.

  • Get at least a part-time professional conference organizer to help with the patient program. “Even though it would have meant taking the time to train them on the attendees' quirks, it would have saved us time in the long run,” Gardner says.