Thursday, March 14, 2013

A Great Experience

Last Friday Mat and I were invited to a HBO Documentary film premiere.  Mat's lab has done some work on Progeria (read about that HERE) and so we got to go.  It was a really unique experience and I am so glad we got to go.

The film was in Boston because the family lives in Massachusetts.  The theater was REALLY cool.

The film was about Sam.
The family that was part of this documentary runs the Progeria Research Foundation which has raised millions of dollars for clinical trials to help cure progeria.  Right now they have found some medications that help control the symptoms which will hopefully prolong these kid's lives.

Kids with Progeria live an average of 13 years.  Some more, some less.  The boy that the film was about - Sam - just turned 16 years old.  He has outlived his life expectancy by 3 years.
Sam was the most well spoken kid I have ever met.  It was great to listen to him and watch his life story on film. 

His mom said a lot of things that Mat and I say when it comes to Finley.  She saw a problem and she is working to solve it.  She races the clock to save Sam's life and the lives of all the kids with Progeria.  Listening to her solidified for us that we are doing the right thing for Finley and kids like her.

Parents will change the world of science.  They have been for many years, and we are getting stronger.  There is nothing like the will of a mother to save her child to get science to move forward.  We will never stop. 

Sam's mom is determined to save him.  She has devoted her life to saving his.  And so far, she is winning!!

Sam's movie - "Life According to Sam" will premiere on HBO this fall and then will be out on DVD in the spring.  You should try to catch it.  It was amazing.

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