197 17 50 LINKEDINCOMMENTMORE

Eric Von Schaumburg, 30, of Chicago loves baseball. A White Sox fan who feels the words of Lou Gehrig's famous speech. The 75th anniversary was Friday.

"I remember doing school projects on Lou Gehrig and running around the house, saying, 'I consider myself (myself myself) the luckiest man (man man) on the face of this earth (earth earth).' I thought it was the coolest and most inspirational speech ever. Then, things came full circle," the former high school second baseman writes when contacted by e-mail, as he can no longer talk.

More than a year ago, Von Schaumburg noticed his speech was slurring. The financial services vice president had problems in presentations. Neurologists diagnosed him with amyotrophic lateral sclerosis (ALS) shortly before last July 4.

"They were doing a SportsCenter special on the famous speech, and I cried my eyes out for a few hours," he says.

ALS is a neurodegenerative disorder affecting motor nerves' connections to the skeletal muscles, explains Eric Sorenson, a neurologist at the Mayo Clinic, where Gehrig was diagnosed in 1939. The nerves degenerate and the muscles lose function; eventually the person has trouble eating, speaking and breathing.

French pathologist Jean-Martin Charcot first described ALS in 1869. Though the British called it motor-neuron disease, Americans began calling it Lou Gehrig's Disease after the famous speech.

"People are a year into it when they make it to a neurologist. It might start in the hand or speech," Sorenson says, but there's no blood test. "Eventually, after an MRI or spinal tap doesn't show an alternative, an electromyography test may show widespread nerve damage, which confirms the diagnosis."

Prognoses vary, but the average survival is three years, and 10% live five years or more, according to Sorenson. He says a few can live for 20 to 30 years.

No cure has been found since Gehrig's death in 1941. Only one FDA-approved drug, Riluzole, can slow down the course, but it only prolongs life by three or four months. Treatment focuses on quality of life, through supportive technology such as wheelchairs or voice amplification.

Von Schaumburg credits the staff at the Muscular Dystrophy Association's University of Illinois-Chicago clinic with helping him. MDA is one of the four ALS organizations Major League Baseball supports, along with the ALS Association, ALS Therapy Development Institute and Project ALS.

Commissioner Bud Selig developed the official league wide "4ALS" campaign at the 70th anniversary, but individual teams such as the New York Yankees had been working with local ALS groups long before then.

The ALS Association of Greater New York's 19th annual Lou Gehrig Sports Awards Benefit Dinner raised more than $1 million in November.

The Phillies Phestival, an autograph and auction party since 1984, brought in a record-breaking $904,732 this year. In 30 years, the Phillies have raised more than $15 million to benefit ALS patient services, respite care and research trials, says John Weber, VP of ticket sales and operations.

Ellyn Phillips — whose husband, Alan, died of ALS and who has been president of the ALS Association's Philadelphia chapter since 1984 — says her mother, Malvina Charlestein, brought the cause to the attention of Phillies chairman Bill Giles and his wife, Nancy, in the early 1980s.

"We were shocked when the doctor told us Alan had motor-neuron disease," Phillips says. "No doctor wants to tell a patient — especially not a 34-year-old patient — the words 'Lou Gehrig's Disease.'"

He died at 36.

Phillips says one way her chapter has helped is through an ALS center at Pennsylvania Hospital that offers "one-stop shopping" so patients can see several specialists at once.

Phillips says players — such as Geoff Geary, who played from 2003 to 2009 for the Phillies and Houston Astros — also have felt the cause. Geary was a Phillies relief pitcher when a close friend, Erich Wendel, died of ALS at 27.

"When I first got called up, in Montreal in 2003, Erich watched the game on TV," Geary says of his childhood teammate. "He became my mentor. He'd watch the games, send me e-mails about things I was doing wrong. It was like a Post-It note from a parent."

Geary recalls a time while he was in Class AAA when he contemplated quitting.

"He told me, 'You're not living your dream now, you're living mine. If you quit, I quit,'" Geary recalls. "It made me realize we have no reason to complain about our lives. Erich was ailing from something far worse."

When Wendel died in 2003, the loss was life-changing. "Erich has molded me into who I am now," Geary says.

Kent Hrbek's first game, Aug. 24, 1981, was playing first base for the Minnesota Twins — at Yankee Stadium. "It was one of the highs and lows of my life going on there. My dad is diagnosed with Lou Gehrig's Disease, and I'm standing on first base, where Lou stood," he says.

Hrbek's father, Edward, died in 1982.

"He was happy he could run around town and say, 'My kid is playing,' but we knew the inevitable was near," he says.

Hrbek and his wife founded golf and fishing tournaments for the cause and have raised more than $1 million to help ALS patients. Former catcher Terry Steinbach, who lost his father to ALS, and Twins manager Ron Gardenhire also give support in fundraisers such as an annual snowmobile tour.

The Twins' "Strike-Out ALS" campaign pledges $10,000 per home strikeout.

"The fact MLB is focusing on this provides even more hope in moving ALS research forward to finding a cure," says Carrie Munk of the ALS Association, which is funding 98 active research projects. "The money is great, but what is so valuable is they touch so many people.

"Lou Gehrig was the first face of ALS, but there's so many new faces every day."

Faces such as Von Schaumburg, who says playing competitive sports gave him an edge: "It's the single biggest reason I'm fighting this with so much energy and hope. … You just don't want to lose at anything."

He acknowledges a Sox win or loss dictates his mood, too, and that intensity is his "real" disease. "So you throw at me Lou Gehrig's Disease, I just refuse to let this thing get to me," he writes. "If God's plan for me was to take 84 million more breaths, then … I'm going to take 284 million more breaths before my life is over."

With Gehrig's trademark gratitude, Von Schaumburg cherishes his family, girlfriend and friends who fill his life with love and support. Still with the use of his limbs, he's checking off bucket-list goals, recently golfing at Pebble Beach.

"LG's consecutive game streak spanned across 14 seasons," he writes. "That means in 14 years, every day, Gehrig woke up, used his mental prowess to block out any ailments, put on his work clothes and went to the office. Every day, I try to emulate that. Block out everything else, make this a productive day and make it the best day of my life."

197 17 50 LINKEDINCOMMENTMORE
Read or Share this story: http://usat.ly/1lFDyDP