The last thing Josh Sommer expected he'd be doing in college was playing meeting planner. Then again, the 20-year-old Duke University engineering major didn't figure on being diagnosed with a malignant tumor, either.
"I view the meeting planning as a means to an end," says Sommer. That end: a cure for chordoma, a relentlessly aggressive, extremely rare (one case per two million people) and ultimately fatal cancer, with a post-diagnosis survival rate of seven years. The means: Convening dozens of the world's leading doctors and medical researchers, by invitation only, for a conference designed to defuse the ticking time-bomb called chordomano easy feat when the planner just happens to be a patient as well.
PLANNING 101
With that in mind, Josh, along with his mother, Dr. Simone Sommer, founded the not-for-profit Chordoma Foundation in February 2007, then quickly followed up by planning their First International Chordoma Research Workshop for May of the same year. "The goal was to try to foster communication and to facilitate an exchange of ideas among physicians and researchers," says Josh. "A big part of having that initial meeting was to introduce the two communities, trying to both build and stimulate ideas and get them to work together."
The challenges were daunting. For starters, there were ongoing health issues faced by Josh and all chordoma patients: pain, weakness, and repeated hospital stays necessitated by surgery and radiation treatments. Dr. Sommer was battling health problems as well, surviving both ovarian cancer and mycotoxicosis after being exposed to toxic mold a few years ago. Moreover, neither mother nor son had ever planned anything more detailed than a Super Bowl party.
"As there were so many different disciplines coming together we wanted something small and intimate, with as much time for breakouts as possible," says Josh. "One way to do that was to create a face-to-face meeting for small-group collaboration."
The Sommers certainly had a wealth of ideas, energy and, with Dr. Sommer's medical degree, some great connections to put together an all- volunteer board of directors. What they lacked was nuts-and-bolts planning knowledge, for which they turned to a higher source for help: The National Human Genome Research Institute (NHGRI) at the National Institute of Health (NIH).
Dr. Francis Collins, director of NHGRI and Dr. Steve Groft, director of the Office of Rare Diseases, gave the initial green light to the Sommers' request for a chordoma conference, while NHGRI deputy director Dr. Alan Gutmacher agreed to serve as the organizing committee chair. "They recognized that there was a great need to have a workshop on chordoma," says Dr. Sommer. They also keyed in to the fact that while planning novices, Josh and Dr. Sommer nonetheless had a knack for get-togethers. "One thing they commented about was that Josh and I were able to assemble a remarkable group of workshop attendees who had a unique spirit of camaraderie and collaboration," says Dr. Sommer, "especially from individuals from customarily competitive institutions."
Josh agrees, adding that another major challenge was simply getting such high-powered personalities to the table. "We would never have thought it possible for a neurologist to be interfacing with an orthopedic surgeon like this," he says. "Having them come together has really catapulted the science in the past year."
Neither did it hurt that the NHGRI had a savvy planner on hand to help. "A lot of the things we did were at Josh and Simone's suggestion," says Susan Vasquez, special assistant to Dr. Gutmacher. "They already had some great ideas and we just handled the mechanisms to make it happen."
Specifically, Vasquez, who plans several NHGRI events annually, came on board and with some NIH funding, worked with the Bethesda North Marriott Hotel & Conference Center in Bethesda, MD on the main meeting logistics, helping to arrange attendee travel, meeting room setups, and food and beverage requests. Vasquez also ran with several of the Sommers' ideas, including a conference binder with slides, speaker information, and business card sleeves, and a cocktail reception that featured posters highlighting the current research work of various attendees.
The Sommers also received a huge helping hand from the Bethesda North Marriott Hotel & Conference Center, which has handled all three of the Chordoma Foundation's events thus far. They "learned from our first event what our needs were and were able to revise things this year," says Dr. Sommer, adding that the Marriott "also made every effort to accommodate the special needs of the patients that attended."
A FIRST-HAND UNDERSTANDING
Josh and his mother also took their case for a conference to Sharon Terry, president and CEO of the Genetic Alliance, a coalition of more than 600 disease- specific advocacy organizations based in Washington, DC. "You can imagine all the requests I get and unfortunately there's no way I can respond to everyone," says Terry. There was something about Dr. Sommer, however, that made Terry think twice. "She was both persistent and compelling, and specifically interested in how to accelerate chordoma research," Terry says.
What she offered the Sommers was empathy (both of Terry's kids have a rare diseasePXE, or pseudoxanthoma elasticum, which causes a degeneration of vision, skin texture, and the gastrointestinal system) and her personal planning experience. Having founded PXE International, Terry had assumed the planning mantle herself, arranging her own meetings and helping other rare-disease groups plan their conferences as well. That experience, in turn, served as a medical meeting template for what the Sommers hoped to accomplish.
"I told Simone that she needed to get a group of scientists together who care about not allbut at least someőaspects of the disease, people who are not so invested in their own cause that they couldn't grasp the larger agenda and what really matters," Terry says. She also counseled a "less-is-more" philosophy. "The idea of thousand of attendees might sound great for another type of meeting," she says, "but for a research group a small number of people50-80makes it a much more effective experience."
A good moderator would also prove critical to the meeting's success. "You really need someone who's not shy, not afraid to make mistakes, and who knows how to keep people on time and on pointI've seen that masterfully done," says Terry. "Also, a good moderator will pause the meeting periodically to say, 'Okay, here's what I just heard you sayis that correct?' And it's critical that the moderator gets the 30,000-foot view of things because that view does focus and drive the tone and direction of the meeting."
And given the Chordoma Foundation's planner/patient aspect, Terry also encouraged the Sommers to incorporate a decidedly human element into their medical meeting. "We sort of empowered Josh to open the event," she says. "A compelling patient who lives with chordoma every day puts a face on the disease and lowers everyone's resistance to sharing their knowledge."
In the end, 2007's results proved revealing and rewarding, with 53 attendees and an explosion of interest in chordoma research. "We were actually surprised at the ground swell of enthusiasm," says Josh, adding that they had to turn some folks away. "These were top doctors and researchers and they closed up their labs and operating rooms to do this." The conference planning also came with a built-in attendee incentive, though, which explains why those labs and O.R.s were closed. "This was a chance to make a difference," says Josh, "an opportunity not necessarily to make a name for themselves but perhaps publish a paper in a field that so far has not been very well known."
NEW YEAR, NEW CHALLENGES
With 2007's inaugural success behind them, the Sommers decided to expand this year's activities to include both a Second International Chordoma Research Workshop and the First Chordoma Community Conference, held back-to-back in April. What became clear early on, however, was the expanded program needed another seasoned planner, one who lay just around the corner.
"I came onboard about a month before the actual events," says event coordinator Amber Johnson, president of AD Edwards Consulting, who came to the Chordoma Foundation by chanceher husband Keith took care of all the group's printed material. "Simone mentioned to him that while they had done a lot of the planning the year before, this year was much bigger and they were getting stressed out," she says. "I jumped in head first."
To wit, Johnson worked with the Marriott, arranging meeting space, food and beverage setup, and time scheduling. "I did a lot of interaction with the speakers and the topics they wanted discussed," she says. Johnson also kept tabs on the little things that could become major headaches, like name badges and break snacks.
The dual-purpose program also proved a hit, with 80 workshop attendees comprised of M.D.s, Ph.D.s, and four chordoma survivorstwo of whom are M.D.s and have chordoma themselvesplus some 120 patients, parents, caregivers, and volunteers for the interactive Community Conference. The April event also included the First Chordoma Youth Network, an all-day program designed specifically as a workshop for 12- to 18-year-old chordoma patients.
The entire experience has given both Josh and his mother a new respect for professional planning. "It's exhausting," says Dr. Sommer, adding that "there's clearly a need for event planners to help non-profit organizations do meetings. If there are event planners who want to make a difference not only to chordoma but any other non-profits, that would be a wonderful outcome of all this."
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TIME OUT
Cancer can be difficult enough for adults. For young adults, the cumulative effects of surgery, radiation, and chemotherapy can be absolutely devastating. With that in mind, Josh Sommer and his mother, Dr. Sommer, set aside special time at this year's International Chordoma Research Workshop for patients ages 12 to 18 via their First Annual Chordoma Youth Network, where teens could gather and vent about their personal, often isolating experiences with the disease.
"They wanted to bring these kids together for the first time and give them a sense of community and belonging," says Carolyn Rubenstein, president of Carolyn's Compassionate Children and the creative and financial source behind the project. "These kids came in from all over the country, and they'd felt very isolated from each other," she says. "I thought the idea would be empowering and incredible."
Indeed, Rubenstein initially planned an entire day of activities especially for the group, which included two young adult survivors to help her moderate the program. But when she saw how powerful the effect was on her attendees of simply sitting and talking, Rubenstein chose to run with that. "The most important part for them was to let their guard down," she says. "Once they did that I just sort of let things take their course. They started to open up, talk about their emotions, and realized that others were going through the same thing as well."
Originally published July 1, 2008
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