Connective Issues - Fall 2019

FROM THE CHILDREN’S AND TEEN PROGRAMS We had 78 children and 65 teens in the special conference programs designed just for them. Here is some of what they had to say: “The breakfast with doctors helped me feel comfortable reaching out to more doctors.”

loved “meeting the best people who are now life-long friends.” One post- Conference survey respondent said that they could never have “talked to so many specialists, easily, and in one place, anywhere else.” For Julie Martinez, of Texas, “the best part was feeling part of a community and having my son realize he is not and won’t ever be alone in this journey.” As we wrapped up the 35 th Annual Conference, we couldn’t help but pause and reflect on all the friendships, learning, fun, and support that occurred in our little corner of Houston that weekend. Mandy Shaw, of Texas, summed it up best. She said, “The sense of community and family we found over a long weekend being surrounded by people who just get it was undeniable. Not to mention, the invaluable sessions of information. I’m overflowing with happiness and relief right now.”

at a future date. This gave people all over the globe an opportunity to hear critical medical information from experts on these conditions. After 83 Health Fair appointments, 98 workshops, and one fantastic comedy show, it was safe to say that the goals of education and connection were met and exceeded. Nearly all of post-Conference survey respondents said their experience left them satisfied or highly satisfied. From support groups and education sessions, to social activities and parties, so much was gained in such a short time. Heading home, Vaughnie Yorke of Ontario, Canada, shared that she

“My two teens look forward to this every year!”

“I liked how people talk to each oth- er and are friendly.”

“I liked learning about how to tell others about my condition.”

DOWNLOAD AND WATCH the 2019 Annual Conference General Session speakers at: Marfan.org/generalsession

“This was our first year with children attending. The leaders were exceptional with our son and we look forward to next year!”

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Fall 2019

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