Boy Raises Money Mountain by Mountain

August 10, 2011

Boy Raises Money Mountain by Mountain

Fenceviewer.com | 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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‘It’s not like I’m asking for anything new. I just need my medicine.’ Liability issue clouds access to medical pot

February 27, 2011

‘It’s not like I’m asking for anything new. I just need my medicine.’ Liability issue clouds access to medical pot

Sun Journal | February 26, 2011 | By Douglas Rooks

The medical marijuana law passed by voters in 2009 was supposed to create greater access to the drug for those suffering from a lengthy list of illnesses. It replaced a 1999 law, also enacted at referendum, that made it legal to possess marijuana as medicine but offered no system for patients to obtain it.

More than a year after the vote, and two months after the new registration system took effect, patients are still struggling to find doctors willing to write medical certificates, as is now required. And some patients are worse off than before.

One of them is Nicholas Stanley, 32, of Farmington, who was rendered quadriplegic by spinal muscular atrophy, a condition brought on by a congenital defect known as a tethered spinal cord. The problem manifested itself during high school, and Stanley has had three surgeries to correct it — but they only made the problem worse, he said recently.

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Same warmth fills new house for Beth Coffin and family

January 2, 2011

Same warmth fills new house for Beth Coffin and family

Sun Journal | January 2, 2011 | By Leslie H. Dixon

WEST PARIS — No presents were required under Beth Coffin’s Christmas tree this year. A new house that the community built for her was all she and her family could have dreamed of.

“This year I didn’t think we needed anything,” Beth’s mother Bonnie Coffin said, as she and her daughter and partner Gary Waterhouse sat in the living room of their new house on Porter Street in West Paris recently. A Christmas tree decorated with large colorful bulbs and handmade ornaments stood in front of the big picture window.

Beth, 25, suffers from spinal muscular atrophy type II, two blood diseases and scoliosis that has left her wheelchair bound. Doctors said she would not live past the age of 2. Bonnie, who is her full-time caretaker, and Gary both have chronic Lyme disease. A year ago, their home, an old trailer with a stick-built addition, was literally falling apart around them.

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