Connective Issues Spring 2019

The Marfan Foundation Annual Conference is always full of stories about excitement, connections, and joy. As we embark on the 35th Annual Conference, we can look back at how far we have come—the scientific breakthroughs and medical advances, the extended life expectancy because of better diagnosis and treatment, and, more than anything, the increased sense of community among people with Marfan and related conditions. If you have never attended one of our conferences, this is the year. If you have some trepidation, you are not alone. Some of our long-time conference attendees share their experience. CONFERENCE OPTIMISM GIVES HOPE FOR THE FUTURE

u “What we have now is a real sense of optimism and community,” says Ben Weisman , pictured with his wife, Lindsey .

Finding His People Ailyn Lim, of Orlando, attended her first conference in Rochester, MN, in 2008, with her son, Joshua, who had just been diagnosed with Marfan. It was only months after Joshua's father passed away due to Marfan-related complications. “I had missed completely that he hated Marfan and the thought of going to the Conference just reminded him of it,” said Ailyn. The family had been laser-focused on the medical side of the diagnosis and getting the right treatment. They hadn’t previously met anyone else with the condition and hadn’t considered the value of this. Ailyn brought Joshua to the con- ference. By the second day, Joshua had a whole new outlook on his con- dition. “When Josh got back from a day with the teen group, he was a com- pletely different person. I thought, ‘is this the same boy?’” said Ailyn. “He looked at Marfan differently after he’d met other kids who looked and felt like him.” That weekend, Ailyn and Joshua learned about things that are not found in a textbook or on the internet. Ailyn said, “For the first time, we were seeing lots of people with Marfan. And they were having a normal life as much as possible.” Ailyn and Joshua have attended nearly every year since.

t After going to his first conference and meeting other kids with Marfan, Joshua Lim (second from right) gained a new perspective on living with his condition.

Photo courtesy of Tim Joyce

This year marks the third time that the Annual Conference will be held in Houston, Texas. We are grateful to Texas Children's Hospital for their partnership for our 2019 Annual Conference.

4 Marfan.org