Connective Issues Fall 2015

ANNUAL CONFERENCE

LIVING SUCCESSFULLY WITH MARFAN SYNDROME AND RELATED DISORDERS

A LIGHT IN THE DARK Ann Reinking brings special ballet performance to conference During the conference, attendees were treated to a special perform- ance of A Light in the Dark, the story of Helen Keller and Anne Sullivan. The ballet was presented by Thodos Dance Chicago and co-choreographed by Ann Reinking and Melissa Thodos. Reinking, the Tony Award-winning actor and choreographer, has a son with Marfan syndrome and has been a long-time supporter of The Marfan Foundation. “We were thrilled to work with Ann to make this performance possible,” said Benjamin Weisman, a member of the Foundation’s Board of Directors. “It was a wonderful, moving production and gave conference attendees another opportunity to get together.”

MEAGHAN JOYCE (FOREGROUND) WITH PANELISTS HEATHER EARNHART AND KYLE MCARTHUR

The closing panel of our annual family conference featured several of our members who are living successfully with their diagnosis. Here are excerpts.

Meaghan Joyce, 20, of Cape May, NJ, who has Ehlers-Danlos syndrome Being a part of The Marfan Foundation has given me countless blessings. When several children and teens in my home- town were diagnosed with EDS and Marfan syndrome, I was able to be their mentor and help them understand that being a Marf is not such a bad thing. Through the Marfan Foundation I have even narrowed down my career path — my goal is to become the Dr. Dietz of my generation. Upon my daughter Gabriella’s diagnosis of Marfan syndrome at age five, I spent every free moment delving into docu- ments, articles and papers I could find on Google Scholar related to Marfan. I was also lucky to have a great resource in The Marfan Foundation. I strongly believe that community is probably the best support we can all have. Connecting with people who know and understand the specific trials we are all going through. Remember to get informed and talk to your child about how they feel. Heather Earnhart, of Chicago, who has a daughter with Marfan syndrome

Kyle McArthur, 17, of Wilsonville, OR, who has Marfan syndrome I found out about The Marfan Foundation during a 7th grade science project and ended up going to the conference that year because it was in Portland. That was possibly the best weekend of my life. I could finally talk to someone about what I was going through. I made a lot of fantastic friends… Sometimes all we need is for someone to be there who understands. I became active with The Marfan Foun- dation so late because of my denial of my condition. The main reason I became involved was because of my seven-year- old daughter, Emily, who is also affected by Marfan syndrome. I want her and the rest of the Marfan community to have a much easier time with this condition than I did… I want Emily to have an easier road ahead of her than me, but if she doesn’t, I want her to know that she can do this and I’ll be right by her side every step of the way. Michael Kramer, of Rockville Centre, NY, who has Marfan syndrome

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