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Neurology Now:
doi: 10.1097/01.NNN.0000407003.32662.5e
Departments: Speak Up

Attitude Determines Altitude: Amytrophic lateral sclerosis can't take away my father's spirit.

Shanton, Steve

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During the past 10 years, Steve Shanton has built his general contracting company, Venture Construction Group, from the ground up. In the process, he has traveled throughout the U.S. but still has never met anyone with such a caring heart as his father.

My father, Marty Shanton, has a favorite saying: “Attitude determines altitude.” He not only continues to live by it at the age of 69—and in the face of a fatal disease—but he also inspires those around him to do the same.

Our family has lived in and around Fairfax, a small city in northern Virginia, for generations. My father was a high school football standout in northern Virginia. After graduating, he enlisted as a reservist with the United States Marine Corps. He proudly served his country for five years.

Marty then opened his own life insurance agency, which has been successfully operating since the 1970s and is now called TermRates.com. He married his high school sweetheart, Susan Shanton. They recently celebrated their 47th anniversary.

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Over the years, Marty has been a role model not just to me—his youngest son—but to many others in the community. He has assisted many people in opening up their own businesses just for the joy of seeing them succeed.

In other words, my father is the kind of man who believes in living life with passion and helping others. That's one of the many reasons his diagnosis of amyotrophic lateral sclerosis (ALS), in April of 2010, was such devastating news.

Amyotrophic lateral sclerosis is a neurologic disease that causes muscle weakness, disability, and eventually death. The life expectancy of people with ALS is usually two to five years after diagnosis. My father is resolved to live as long as possible and to maintain the best quality of life that he can during that time.

“I'm a warrior. I'm determined not to let this disease beat me,” he says.

Hearing him say this keeps hope alive in the hearts of his friends, family, and loved ones. We aren't willing to give up easily either.

But I wasn't always so resolved. In fact, I spent six frustrating months in denial because I didn't want to accept that my father has ALS. Then, I began frantically calling doctors to find out if any treatments are available to slow the disease. Only one—riluzole (Rilutek)—has been shown to help at all. Riluzole can prolong the life of someone with ALS by a few months, but it's far from a cure.

So, with a close family friend, Felix Yesquen, I decided to open the Shanton ALS Foundation to raise money to help current and future ALS patients. The foundation's goals are to raise awareness of ALS as well as funds for research.

This October, the Shanton ALS Foundation is teaming up with the ALS Therapy Development Institute (ALS TDI; the Web site is als.net), a research facility focused on finding a cure, to host the first annual Marty Shanton Golf Classic in Northern Virginia. The Shanton ALS Foundation is also planning to host three or four other charity benefits from North Carolina to Virginia in the next year. Proceeds from these events will be donated to the DC/MD/VA chapter of the ALS Foundation (webdc.alsa.org), the ALS TDI, and the American Academy of Neurology Foundation (aan.com/foundation).

It's hard to see someone so intent on putting others before himself suffer with a disease like ALS, but it is also inspiring to see the loyalty and dedication of his loved ones in response.

If you would like to know more about my father and our efforts to raise money and awareness for people with ALS, please visit theshantonALSfoundation.com. Let's keep fighting for everyone who has this terrible disease.

©2011 American Academy of Neurology

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