Connective Issues Spring 2019


The moment the 35th Annual Conference begins in Houston will be a culmination of months of activity. And in that moment of coming together, there are celebra- tions, hugs, and greetings. There are applause and laughter and a joyful energy that fills every room. Some people are there for the first time, having never met someone with a genetic aortic condition. Others have been coming for years and have developed a pack of friends who connect and support one another year-round. Behind the scenes of every Confer- ence, there are dozens of individuals who believe so deeply in this experience that they have donated scholarships for those who could not attend with- out them. Caryn Kauffman is one of these donors. “My first conference was an unforgettable experience,” she said. “I was not involved with The Marfan Foundation growing up and, there- fore, never really knew anyone with Marfan syndrome outside of my family. It is really hard to describe how comforting it was to know everyone else in the room was going through the exact same challenges and just ‘got it.’” Caryn, her brother, and their father are all affected by Marfan. As a family, they experienced many challenges, and they handled them together. If there were to be chronic conditions in the Kauffman family, then they would do their best to meet them with optimism. This spirit drives Caryn’s continued generosity to the Marfan and related conditions community, which, in turn, pours even more inspiration into every Conference. That inspiration, for Caryn, is in “seeing children cry when Conference

Photo courtesy of Tim Joyce p Caryn Kauffman (right), with her mother, Mary Kauffman (center), and sister-in-law, Kate Kauffman, said that “there is an indescribable feeling you get when you meet others who totally understand your situation.”

“I believe everyone should have the opportunity to attend a conference.”

is over because they do not want to leave their new best friends. It’s in witnessing two teenage boys lift up their shirts to compare who has the bigger scar—a sign of pride and not shame. It is when moms get together in the evenings each night so that they can share experiences and, most importantly, laugh.” Since the Conference started in 1984, there are more ways to stay connected between conferences. Still, nothing can replace the rare opportunity to be surrounded by members of the community. This is at the heart of Caryn’s commitment. “I believe everyone should have the opportunity to attend a conference. Sure, social media enables a tremen- dous amount of information sharing, but there is an indescribable feeling you get when you meet others who totally understand your situation,” she said. “I also think having an opportunity

to speak one on one with our leading physicians is invaluable. Finally, I think it is so important for the children to meet one another and know they are not alone.” Over the years, the generosity of our community has grown and inspired the Foundation to build a scholarship program that honors the vision of donors like Caryn. In the coming weeks, and at the 2019 Annual Conference, we’ll be sharing more about our campaign to offer Annual Conference scholarships for years to come. We are excited to celebrate those who have laid the groundwork for this initiative and to share ways that everyone can be involved. If you’d like to learn more about the scholarship campaign, please contact the Foundation’s Director of National Philanthropy, Megan Martin, at


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