Connective Issues Spring 2019

Conference, while working with the teen group, he realized he could make a positive impact by being open about it. “Middle school is about ‘let’s find reasons not to like people,’” said Ben. “Now we help remove the stigma and give people the tools to be comfortable with who they are. We help them accept and face their challenges because they do not have to go through this journey alone.” The following year, Ben went to the Annual Conference in Chicago to help lead the teen program, which had 38 registrants that year (and now attracts 100 or more annually). The optimism continues to build, thanks to research, education, and medical advances. When Ben was born in 1983, the life expectancy for someone with Marfan was in the 40s. Now it’s essentially normal (with diagnosis and treatment). “There are so many young people who come to the Annual Conference and for them to see older people is a beautiful thing,” said Ben. “I see them looking at people in their 60s and 70s, and they see a future. The value of that is priceless.” With advances in many areas of treatment, people are living longer and the community has grown. Now it is the combination of both—med- ical and community—that makes the Annual Conference such a special experience. First-timers experience it right away. And that combination is what keeps people coming back every year.

Photo courtesy of Tim Joyce

A Change of Heart Ben Weisman, of New Jersey, tells a similar story dating back to his first conference in 1999, when he was 15. His first Annual Conference experi- ence in Pittsburgh was something he never intended to repeat. “On the plane ride home, I told my mom I was not going back and I didn’t want anything to do with the people we’d met,” he said. Ben made good on his promise until he was invited to speak at the Annual Conference in Los Angeles in 2002. He has attended every year since then, first with his mother and then with his wife.

What changed? “What we have now is a real sense of optimism and community,” said Ben. “When I was involved in the 90s, the research hadn’t caught up. It was depressing. I always tried to live my life with a sense of optimism and I didn’t feel the encouragement at that time.” It was a different story in 2002. At that conference, Ben met a couple of people in the same stage of life, interacted with the small teen group, and had a lightbulb moment. As a child who had been teased for the ways that Marfan made him stand out, Ben had become an expert at hiding it. But at the 2002 Annual

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NEW IN 2019

Special programs and activities are planned for those affected by Loeys Dietz syndrome and vascular Ehlers-Danlos syndrome. View the Annual Conference program at for details.

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