Teen Spotlight

Peter Donoto at the 2009 NMF Conference

Interview by Ben Weisman, Teen Leader

Peter Donato is just one of those people.  One of those people who is always there to help where he is needed.  One of those people who is so well-liked by his peers that they always want him involved. One of those people who will do anything he can think of to raise awareness about the work of the NMF and one of those people who is there when someone is dealing with a tough challenge.  With leaders like Peter, the NMF has a very bright future indeed.  Recently, Peter answered a few questions for us and is a great example of how much you can accomplish in your school or community if you set your mind to it.

How did you become involved with the NMF?  What have you gotten out of your involvement?

I became a part of the NMF when I was diagnosed with Loeys-Dietz Syndrome in 2005.  My involvement with the NMF has given me the power of friendship because everyone is so nice and we can always have a good laugh or two.  I have a better understanding into the meaning of life and how it can change in the blink of an eye and it should never be taken for granted.

What sorts of fundraisers/awareness programs have you done?

I just recently did my first fundraiser; my friends and I sold chocolate hearts during lunch at school for Valentine’s Day.  I also plan to volunteer at the “Celebrating Marfan Life and History” event to be held in Winthrop, Mass in May.  And I’ve spoken to my middle school and high school classmates about what Marfan and Loeys-Dietz Syndrome are to raise awareness of these disorders.

Why did you choose to do them?

I chose to talk to my school and classmates about Loeys-Dietz because it is a part of my life and I can’t get rid of. It won’t go away. I did the fundraising because the NMF gives so much to so many people and thought I should do something in return.

How did you go about spreading the word?

I prepared a power point presentation about Marfan Syndrome and my life and showed it to my school.  I also gave some of my classmates and teachers Have Heart wristbands.

Any advice for other teens who may want to do something similar?

Go for it and don’t let anything stop you from raising money and spreading the word about Marfan Syndrome and its related disorders.

Any other thoughts you would like to share?

Don’t be afraid to tell someone about Marfan Syndrome because it is an important part of your life and by educating people, you may save a life!