When Life Is Short: Sheryl Grossman has Bloom's syndrome, a rare genetic disorder that stunted her growth and will kill her before she sees fifty. But don't underestimate her.

Grossman had hoped the other doctors at the medical conference would be more receptive. "Our mission is to fill the gaps in your research," she told them. She relayed the Bloom's Connect group's request for more information to share with their doctors at home and asked for more financial support.

Afterward, several researchers, including the conference chair Dr. Vilhelm Bohr, gave her business cards and invited her to call them to discuss further collaboration between the scientists and Bloom's Connect.

Despite her exhaustion, Grossman is elated. "I think this is the beginning of a fruitful discussion," she says. "Dr. Bohr said he would be in touch. I want this to work. If he doesn't follow up, I will."

On her way back to University of Illinois at Chicago to say goodbye to attendees at the Bloom's Connect conference, Grossman reflects on the progress they have made. The families have already exchanged addresses and promised to keep in touch. Jerry Hesch, Jason's father and a Miami lawyer, has volunteered to help her incorporate Bloom's Connect as a nonprofit charity.

For Grossman, the biggest surprise of the conference was the reaction of her own mother. Karen Grossman had never before been very involved in Bloom's Connect, but during this conference, she became Grossman's main source of support.

"I want to thank Sheryl for putting this together," she tells the Bloom's Connect group. "This has been amazing for her and amazing for me watching her." For the first time, Sheryl grows teary.

"I've never heard her sound so proud of me before," Grossman later reflects. "I'm really surprised she talked so much here. It's like it had all been bottled up for years."

Back in St. Louis, Grossman sips a hot chocolate at the Starbucks in the Delmar Loop and tries to sum up what the Chicago conference meant to her. "It's hard to put into words," she says. "Ever since I was fourteen, I thought I'd never meet someone like me. And now I just met thirteen families at the same time. I'm in my thirties. I'm getting up there. I want to leave something positive. I didn't have much support when I was growing up. Now things have changed forever for people with Bloom's and their families because of this."