Know the Signs, Fight for Victory

My Daughter’s First Marfan Conference – A Decade After Diagnosis

There we were, at The Marfan Foundation’s 2013 Annual Family Conference in Beverly Hills, California, for the first time. Why had we waited ten years to participate? I think back to when my daughter Hadley was diagnosed with Marfan syndrome and am filled with regret. We missed a decade of these annual conferences and opportunities associated with The Marfan Foundation during those first few critical years. Because Hadley has always been so well adjusted and supported by friends and family, I hadn’t seen the need. After all, we were on top of her medical care, regularly visiting the doctors and are fully aware of her treatment options. I just couldn’t see how attending a conference devoted to Marfan syndrome could benefit us. I couldn’t have been more wrong.

In truth we had never even met another person with this syndrome before we attended the conference. Hadley approached it with the same skepticism I felt, but soon discovered there were so many kids her age that could relate to her. She made new friends quickly and they formed a support system. She felt understood by her peers in a way she had never thought possible. I watched her laugh and bond with other remarkable kids so much like her. I, too, made lasting friendships with parents dealing with the same emotions and concerns I have had. We met with renowned doctors who were experts in Marfan syndrome. They generously donated their time, examining hundreds of people living with this condition. It put my mind at ease to know that we were on the right track.

I came to the conference as a concerned mother and left a staunch advocate! I embrace the new tagline for The Marfan Foundation: Know the signs; fight for victory! I welcome the opportunity to be part of a far-reaching organization that supports people like Hadley and promotes understanding of the syndrome, not just to the general public, but also to families dealing with this condition. Our involvement with the Foundation is another layer of support. The friendships made and knowledge gained at the conference is priceless. No one needs to take this journey alone. The support is out there and the opportunity to serve and participate is what brings hope and, of course, victory.

To find out more about the annual conference, Click Here.

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Jennifer Nielson is a member of The Marfan Foundation and the author of Rubberband Girl, a book about her daughter Hadley who is diagnosed with Marfan syndrome. She and her husband have five children and live in Gilbert, Arizona.

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