"BERNADETTE" - LIVING W CMT - CHARCOT MARIE TOOTH

I saw new footage for the Documentary!! Wow!! U r all gonna really see what has been going on and how CMT is Really real!!! Stay tuned! :). The music As well is making this film even More captivating!! And seeing my Dad again .....the best gift of All!

Phillies are doing Great !!! I love watching them play!

Book Project

My friend Jim Sindaco is pursuing a degree in photo-journalism at Temple University in Philadelphia, PA. He recently asked me if he can write a book about my life and living with CMT. He explained that he is going to do research and spend a lot of time photographing me. It will be a hard back book and can be used in the film. I've known Jim since middle school, and I am honored he chose to use me for his project. I'll keep you posted on our progress. Hope everyone has a good weekend! Go Phils!!

New York Science Times features print article on CMT

Tuesday was a great day for me! I was featured in the Science section of the New York Times, along with others with CMT. Check out the online version at http://www.nytimes.com/2011/04/05/health/05charcot.html?_r=1. These are big steps for the CMT community and I can't wait to see what happens next :). Thanks for following me!!
GO PHILLIES!!

New York Times

Hi, I know it's been a while but I'm going to start posting more haha! Today the New York Times launched a segment on Charcot-Marie-Tooth. I was featured in it along with 5 others who have the disease. Check it out at: http://well.blogs.nytimes.com/2011/03/31/the-voices-of-charcot-marie-tooth/. Things are good, feeling good... getting ready for the warm weather, and my birthday is coming up.

NORD Newsletter

Check out the recently published NORD newsletter and share to spread awareness about CMT!!!

http://www.rarediseases.org/files/newsletter-fall-2010.pdf