Connective Issues Fall 2018

IT TAKES A FAMILY “Even when it is tough, wear a smile. Smiling doesn’t always mean you are happy—sometimes it simply means you are strong! And you are….” –Anonymous

Contents QUALITY OF LIFE 4 WALK FOR VICTORY 5 ANNUAL CONFERENCE 6–9 EHLERS DANLOS SYNDROME 10 RESEARCH 11 MEDICAL INFORMATION 12–13 resource for families and healthcare providers, and raise public awareness. We will not rest until we have achieved victory. Learn more and get involved at Marfan.org . The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders. We work tirelessly to advance research, serve as a

Dear Friends, At this year’s Annual Conference, I was struck by the strength, spirit, conviction, and commitment of the mothers of children with Marfan syndrome and related conditions. At conference gatherings, poolside, or in small groups later in the evening, moms were enjoying new and sometimes longtime friends, sharing life’s stories, and celebrating being part of the Marfan family.

Meanwhile, everyone fully realizes the responsibilities moms and dads of children with Marfan and related conditions face every day and sometimes smiles do not come easy. Yet, with extraordinary advances in research and treatment, personal relationships with members of our medical community, sharing of quality of life opportunities, and the power of a warm hug, there are ample reasons to smile and be optimistic about the journey ahead. Adults with Marfan syndrome and related conditions are also extraordinary role models for children and families, living life to its fullest and sharing stories of earlier times when there was not always as much optimism as we have today. Fully realizing the role making connections plays in everyone’s lives, we now have numerous opportunities to bring people together. Our Annual Conference, Regional Medical Symposiums, mentorship program, Walks for Victory, and camping programs are just some of the ways we bring people together to meet new friends and reconnect with old friends, learn from one another, get a respite from life’s responsibilities, and smile! I look forward to seeing you in Houston at our 2019 Annual Conference next July or somewhere along the Marfan highway during the year as we work together to create a brighter future for individuals with Marfan syndrome and related conditions. Yes, it really does take a family. And, we have one of the strongest! Something I smile about every day.

CONNECTIVE ISSUES FALL 2018 VOLUME 37 | NUMBER 3

Enjoy the Fall!

THE MARFAN FOUNDATION 22 MANHASSET AVENUE PORT WASHINGTON, NY 11050 516-883-8712 | 800-8-MARFAN MARFAN.ORG

Michael L. Weamer President & CEO

This issue of Connective Issues is supported by an educational grant from the Chu and Chan Foundation. COVER: PAM BRYSON, OF HOUSTON, SUBSCRIBED TO BACKPACK HEALTH TO MANAGE HER HEALTHCARE RECORDS AND HELP ADVANCE RESEARCH. STORY ON PAGE 11.

MARFAN MOMS (L–R) PAULA FROM NEW ZEALAND, HEATHER FROM CHICAGO, AND ALIX AND JENNIFER, FROM NEW JERSEY, AT THE 2018 ANNUAL CONFERENCE.

2 Marfan.org