Boy Raises Money Mountain by Mountain

Boy Raises Money Mountain by Mountain | August 10, 2011 | By Emerson Whitney

BAR HARBOR — Ten-year-old Gus La Casse pumps two raised fists above his head in a heavyweight-champ, Rocky-type of gesture, demonstrating how he felt at the summit of Katahdin last week.

Gus climbed Katahdin as the finale in his series of 26 summit climbs in one month, which he organized as a fund-raiser for research into a rare, life-threatening motor neuron degenerative disorder that affects infants and children, called spinal muscular atrophy with respiratory distress (SMARD).

Gus was introduced to SMARD through Silas Werner, a 17-month-old from Pittsburg, Penn., who was diagnosed with the disease at 3 months old and whose mother began seeking answers from the Jackson Laboratory where Dr. Greg Cox is one of few genetic scientists in the world, committed to studying the disease.

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