Mixed Nuts: A Great Experience

Quotes

"There is no better way to thank God for your sight than by giving a helping hand to someone in the dark." - Helen Keller
When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, "I used everything you gave me." ~Erma Bombeck
You may never know how strong you are, until being strong is your only choice.- Unknown
Keep your face to the sunshine and you cannot see a shadow' ~Helen Keller
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.
Don't cry because it's over, smile because it happened."- Dr. Seuss
"Life is 10% what happens to you, and 90% how you react to it."
"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."Author Unknown
I have been driven many times to my knees by the overwhelming conviction that I had nowhere else to go – Abraham Lincoln
Be always at war with your vices, at peace with your neighbors, and let each new year find you a better man. ~ Benjamin Franklin
There are only two ways to live your life. One is as though nothing is a miracle. The other is as if everything is a miracle - Albert Einstein
The journey of a 1000 miles starts with a single step
Sometimes in the middle of an ordinary life, love gives you a fairy tale
Where there is great love, there are always miracles - Willa Cather
The Difficult we can do immediately, the impossible takes a little longer
Doing what you like is freedom. Liking what you do is happiness
There are two lasting bequests we can give our children. One is roots. The other is wings.
Be the change you want to see in the world
Don't tell God how big the storm is, tell the storm how big Your God is..........
Everything has beauty, but not everyone sees it
Fall down seven times - get up eight - unknown
Despite our differences, we sink or swim together
Life may not be the party we expected, but while we are here, we might as well dance
"The man who moves a mountain begins by carrying away small stones." -Confucius

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.