What is Sanfilippo Syndrome?

MPS III is a mucopolysaccharide disease and is also known respectively as Sanfilippo syndrome. All individuals with MPS III have deficiency of one of four enzymes,which results in the accumulation of glycosaminoglycans (GAG) inside special parts of the cell called lysosomes. This is why MPS III is part of a larger family of diseases called the lysosomal storage diseases (LSDs). The accumulation of GAG is responsible for numerous problems that affect individuals with MPS III. Sanfilippo is a fatal disorder which will cause gradual neurological and cognitive deterioration. There is currently no cure for Sanfilippo Syndrome.

To donate towards rearch for a cure please go to one or both of the following:

http://www.teamsanfilippo.org/

http://www.mpssociety.org/
"Enjoy the little things, for one day you may look back and realize they were the big things." -- Robert Brault


It's Not About Making it Through the Storm, It's Learning to DANCE IN THE RAIN



A Child

A child is like a butterfly in the wind
Some can fly higher than others,
But each one flies the best it can.
Why compare one against the other?
Each one is different.
Each one is special.
Each one is beautiful.

Author Unknown


All for one and one for all
My brother and my friend
What fun we have
The time we share
Brothers 'til the end.
~ Author Unknown

Wednesday, June 16, 2010

Camp

On another note, Ryan started a week long camp today at the Mary Campbell Center. Believe me, I never wanted to have to step foot in the MCC - it is sad to see the people that live there. But, the camp for kids really is wonderful and Ryan has been having a great time there! He has been so exhausted every night this week. Today they are taking a bus trip to the Herr's potato chip factory! He will enjoy the bus trip much more than the actually factory but it will be interesting to see how he did today! The director and volunteers there are wonderful with the children. We will definitley send him there again.
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Inaugural Beat MPS 5K

We had a very successful Inaugural Beat MPS 5K this past Sunday. Many people came out to support our family and a wonderful cause - despite the awful heat and humidity! We were especially happy to see so many other families effected by MPS - some familar faces and some new faces! We are still tallying the money we raised but we are very happy with the numbers we are seeing. Thank you to everyone who helped put this event together - we could never have done this alone! We just pray that every dollar we raise will get us closer to treatment and a cure for this dreaded disease.
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