ALS survivor shares story of courage, spirit in face of daily struggles

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June 13, 2013, 11:44 am
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Click the attached link to read Pipkin’s blog post in the Huffington Post

(NECN) - Governor Paul Cellucci spent the last years of his life raising money and awareness to fight ALS, which is also known as Lou Gherig's disease.
     
It's a battle that may help his fellow patients living with the disease.

It’s a battle that 41-year old Randy Pipkin fights every day. He can’t use his hands, and just taking takes a monumental effort.

Pipkin and his husband, Mark Malinowski, were living in New York when Pipkin got the diagnosis at the age of 33.

Various devices, such as a pointer for typing on his iPad, as well as a robotic arm, gives Pipkin independence.

It’s small victories like these that keep the two going.

The doctor who treats Randy Pipkin also treated the late Cellucci.
     
Doctor Robert Brown, chief of neurology at UMass Memorial Medical Center, joined NECN to talk about his time with Cellucci.

Brown said that Pipkin is an extraordinary man.

“We understand a lot more now about what can trigger the disease. The question is how do we turn that into treatment,” said Brown.

Brown said Cellucci’s fundraising did very well, but more funding is needed to understand the disease further.

Watch the attached video for more.

Tags: ALS, Paul Cellucci, Lou Gehrig's disease , Randy Pipkin
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