Jul 052011

Sometimes when we’re hiking, my husband and I like to amuse ourselves by trying to quantify what percentage of our hiking pleasure derives from the beauty of the sights versus the endorphins of the exercise.  

But I know someone who isn’t hiking for either of those reasons.  Gus La Casse is climbing for a cause. 

This month Gus, who is a ten-year-old from Trenton, Maine, will be climbing 24 mountains on Mount Desert Island, culminating on July 31st with a final climb up Mount Katahdin, the highest mountain in Maine. 

Gus’ goal is to raise awareness of SMARD, which stands for spinal muscular atrophy with respiratory distress.  It is a rare, life-threatening motor neuron disorder that affects infants and children.  The Jackson Laboratory in Bar Harbor, where both of Gus’ parents work, is one of the few places in the world committed to better understanding SMARD and exploring therapies to neutralize the gene underlying it. 

When Gus is hiking, he’s likely to be thinking about Silas Werner, a three-year-old from Pittsburgh.  Silas’ sister died of SMARD, initially thought to have been sudden infant death syndrome (SIDS).  Silas’ life has been saved through the intervention of a ventilator. 

The Jackson Laboratory is helping Gus with his fundraising event.  Twenty-two Nobel prizes are associated with Jackson Laboratory research, resources and education programs, but because of the current low level of federal funding, more help is needed. 

If you’d like to make a donation, just click here.  You can read more about SMARD research and see the calendar of which mountain Gus will be climbing when.  

And let’s all hope for great weather for Gus in July!

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