Connective Issues Winter 2018


MENTOR PROGRAM CREATES STRONG CONNECTIONS By David Fournier The Marfan Foundation’s mentor program, launched earlier this year, is having an impact on both the mentors and their mentees, with more than 50 connections already made. The mentor program ensures that anyone who wants to connect with someone and ask questions has a way to do this, regardless of their location. It is a great opportunity for people to learn and get support from others in the community. “It is comforting to know that there are others who have gone through experiences



February 1, 2018 The Commissary

HEARTWORKS ST. LOUIS GALA: CELEBRATING A DECADE OF PROGRESS March 17, 2018 Four Seasons Hotel St. Louis Honoring: Marcia C. Willing, MD, PhD, Director, Connective Tissue Disorders Clinic, St. Louis Children’s Hospital

that are unique to Marfan,” said one mentee. “Dealing with situations like teasing, surgical procedures, keeping current with research, medications, avoiding contact sports, and talking to doctors is much easier when you interact with others who have been there.” As a mentee it is important to have someone to whom you can ask questions. One mentee explained that he asked his mentor questions, such as “how do I better communicate with my doctor, stand up for myself when my friends want to play football and I know I should not, educate myself about my condition, deal with teasing from my classmates, or explain my condition to others.” Finding answers to these difficult questions is now made much easier through The Marfan Foundation’s mentorship program. One mentor remembers how it was for him growing up and is happy to serve as a mentor to others. “Even with my siblings to turn to, there were many things I

“I am so appreciative of this program. Sam is a typical teen and doesn’t express himself too much to his parents, but he does enjoy speaking (well, texting) with his mentor. Hopefully, we can connect in person or Face- time some time in the future.” – TERA WOODHOUSE, PICTURED ABOVE WITH SON SAM

HeartWorks Gala May 22, 2018 Ziegfeld Ballroom New York City

would've liked to have talked over with someone who had already experienced them. Someone who could look back and give me the advice that only hindsight can offer,” he said. It is no doubt a daunting experience to learn that you or someone close to you has a potentially life-threatening disorder. Connecting with someone who has overcome the many challenges you are facing is comforting. If you would like a mentor, or you would like to become a mentor, please contact Susan Leshen, senior director of patient & program services and volunteer leadership,,

EVENING WITH HEART CHICAGO April 24, 2018 1st Ward Room at the Chop Shop

David Fournier has been involved with The Marfan Foundation since 2001. He recently completed his Master’s degree in library and lnformation science, and is a life-long learner. David is a member of the Foundation’s Marfan Writing Group.

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