Connective Issues Fall 2018

ANNUAL CONFERENCE

MEANINGFUL MOMENTS

Our 34th Annual Conference, held in association with Stanford Health Care and Kaiser Perma- nente in July, was the largest ever held on the west coast. Nearly 600 people attended, including 83 children 5-12, 70 teens, and a growing young adult group that numbered 60 this year. They joined adults of every age who came together for information, support, friendship, and fun. The large California contingent was complimented by people from all parts of the U.S. and from as far away as Turkey and New Zealand. Here are a sampling of meaningful moments from the weekend.

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Conference for Milly (above left) means she is among a whole lot of kids who are affected in a similar way, but at the end of the day they are all just kids having a fantastic time, wherever the kids program takes them. It normalizes wheelchairs, splints, being tall, having long fingers . . . .” Paula Marshall, New Zealand

I love being a part of a com- munity that actually understands what it is like living daily with a chronic disease. Such a strong group of teens, young adults, parents, and even staff that all have become family. It was a blessing to spend the weekend with our community and meet new friends as well. I'm thankful to be a part of such a caring, strong, and persevering community.” Austin Carlile, Costa Rica

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I attended the conference to meet other people who have Marfan and to learn about the advances in research so that I may be prepared for what lies ahead. I also wanted to look people in the eye without having to shrink down, lean forward, or squat down. We are each unique and, while we stand out because we are different, we all share something in common. It was truly magical to gaze across a ballroom filled with like-minded ‘family members.’"

Joyce Maddox, San Diego, (second from right) who is the Tall Club International liaison to The Marfan Foundation.

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