Lisa Dubin at Her First NMF Conference, 2009. She attended her 2nd this year.

Interview by Ben Weisman, Teen Leader

Lisa Dubin is a pretty remarkable young woman.  At the most recent NMF Conference, Lisa had the opportunity of sharing her story and goals with the NMF Board of Directors and boy, were they impressed!  Lisa’s commitment to helping all her fellow Marfs is awe-inspiring and all who know her are lucky that they do.  Recently we had the chance to ask her some questions about her life and her really exciting awareness project.

Tell us a little bit about you.  Where you live?  What you enjoy doing?

My name is Lisa Dubin, I am 17 years old and I live in Switzerland. My dad is American which is why I speak English fluently, but I was born in Switzerland and have lived there my whole life. I'm a pretty artistic person, art is sort of my outlet. I like to write a lot, and I love to express myself in different ways. I set myself goals, like, writing songs or filming videos whenever I have free time. Most of all, I love music! Playing it, writing it, listening to it! I play guitar and piano and I like to sing. That's basically what I do in place of sports, which I obviously can't do much of since I have Marfans. That doesn't mean I don't play though. I really love baseball, and I’ve been playing softball since I was a kid. I also love to Snowboard!

Why did you decide to make a Marfan syndrome documentary? What are your goals with this project?

In the Swiss school system, our high school goes up to 13th grade. 13th grade is basically dedicated to making a project which will count in your final grades and can determine whether or not you graduate. Usually, it's a written paper (about 35-40 pages) or some sort of documentary on the subject of our choice. We spend over 8 months preparing it and then have to defend it and debate it in front of a board of judges. Ever since my freshman year I’ve known I wanted to do it on Marfans. The problem is that when I gave my topic in, it was refused because of how "personal" it was and I was forced to pick a different subject. I was devastated and that was the last thing I wanted to do, so I fought back and did everything I could in my power to prove that I was strong enough to take on this topic. Trying to convince my school really motivated me and convinced me that I was making the right choice. I wanted to show my school, my friends, my surroundings all about life with Marfans. I wanted to show them how hard all the amazing people I had met at the NMF Conference fought and how strong they are. I also wanted to raise awareness and make a difference.

What does being a part of the Marfamily mean to you?

Being part of the marfamily is the most amazing thing that has happened to me. It changed the way I look at myself and others. It changed my outlook on life and made me appreciate every second of it. There is no describing how it changed everything, but it did. I feel like I belong somewhere, and no matter where I am I will always have all the amazing people I met at the NMF Conference with me, in my heart. If I could, I would take every single person who has Marfans in this world by the hand and led them to the Conference, because I know for a fact it would change their lives!

What advice do you have for other teens who want to raise awareness in their own community?

I've just started trying to raise awareness myself, so I’m no veteran but I think that every single teen out there has the power to do something, anything, to raise awareness in their community and I think they should take it and turn it into whatever they can do to help. I think that every little bit helps and that is something no one should forget. I'm the first to think that "There's no use in me doing this... I'm one person, I can't make a difference by myself". But that's wrong. Everyone can make a difference, and if everyone does, together we can really raise awareness, and help so many people and save just as many lives!