Life with The Leivas: Undercover Boss

Tuesday, February 22, 2011

Undercover Boss

In case you missed it.........

The most recent episode of Undercover Boss brought national attention to Sanfilippo Syndrome. The CEO of Mack Trucks, Danny Slagle, went undercover to learn more about his company. In his undercover role he met with Al, the grandpa of our friends Waverly and Oliver, both of whom have Sanfilippo syndrome. CEO Danny is also a grandfather and he and Al bonded over the love that one has for their grandchildren. Al went on to tell Danny about more about the tragedy that is Sanfilippo syndrome. Al spoke eloquently! He brought much needed and appreciated attention to Sanfilippo syndrome. You can view the entire episode here:

http://www.cbs.com/primetime/undercover_boss/video/?pid=ntkp3mXNw_ZdTo7w1ocF2kWv_S6HdBQ7&vs=homepage&play=true

Mack Trucks also made a $5000 donation to the MPS Society that will go towards funding more research to find a cure for Sanfilippo syndrome.

So in the spirit of paying it forward I'm asking each of you for a favor. Please consider writing a quick note thanking Mack Trucks for their donation to the MPS society. Send to:

Denny Slagle
CEO Mack Trucks, Inc.
P.O. Box 26259
Greensboro, NC 27402

1 comment:

Ashley said...: That's so awesome!!; Tuesday, February 22, 2011 11:54:00 PM

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MPS/Sanfilippo Syndrome

In October, 2008 Olivia was disgnosed with MPS III or Sanfilippo Syndrome, type B. MPS stands for: Mucopolysaccharidoses. It is a genetic lysosomal storage disease (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.

Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.