Chris Hobler considers himself fortunate even though he's got ALS, commonly known as Lou Gehrig's disease.
That may be hard to believe given the life Hobler enjoyed before he was diagnosed with amyotrophic lateral sclerosis, a degenerative disease that is always fatal.
Hobler, 37, is a member of the Maritz clan, one of the wealthiest and most influential families in the St. Louis area. Before ALS, Hobler started a rock band.
He toured the country in a souped-up school bus, releasing CDs along the way. Before ALS, he married the love of his life and brought two children into the world -- now 3 year old and 8 months old. He was diagnosed with ALS in the summer of last year. Since then, it has robbed him of his ability to sing and to play the guitar. His son, Aidan, wonders why he's talking funny and can't play ball.
But ALS hasn't stolen Hobler's passion, his creativity or his will to live. He's simply channeled it into something new: a foundation called ALS Hope The Chris Hobler-James Maritz Foundation. On Saturday, the foundation will hold the Hope Summit at the Pierre Laclede Center in Clayton. It will bring together 17 organizations at the forefront of ALS research.
The summit is the first step toward forming an ALS consortium, a way for people to share knowledge, to provide support and to break barriers that stand in the way of a cure.
"Something wasn't right"
Hobler's world began to change in the fall of 2000 when he was living in New Hampshire and touring nationally with his band.
"One day, I didn't feel quite right," he said. He was working in a recording studio when his speech first began slurring. "No one else could tell," he said, "but something wasn't right."
He packed his bags for a holiday in Syracuse, N.Y., with his wife's family, but the visit turned into months as he went through a battery of medical tests.
But he was already piecing together the clues. His grandfather, James Maritz, died of ALS in 1981. Ten percent of those with ALS have had relatives similarly afflicted.
"I knew this was ALS. I just knew," Hobler recalled. "I grew up seeing this disease."
But he was taken aback that so little progress had been made in fighting ALS since his grandfather died. That is in part because ALS is one of 6,000 so-called orphan diseases - those that affect fewer than 200,000 Americans. Because the numbers are relatively few, drug companies have little incentive to ramp up research or produce medicines.
But Hobler wasn't going to accept "there's no hope" as an answer. He's always enjoyed a challenge. Maybe he gets that from his mother, Jean Maritz Hobler, who is furious that so little progress has been made since her father died of ALS.
"It's absolutely unacceptable," Jean Hobler said of the disease. "I can't imagine telling someone that I've been studying something for 30 years and have no clue."
"The luckiest man"
Though Chris Hobler is gradually losing his motor skills, his mind remains sharp. ALS leaves brain function alone, both a blessing and a curse.
Lou Gehrig, the Yankees baseball star, left the game because of the disease. He gave it its popular name. In a memorable farewell speech at Yankee Stadium, Gehrig said, "Today I consider myself the luckiest man on the face of the earth."
Hobler echoed this sentiment.
Losing his singing voice first was the best thing that could have happened, he said. He had to give up his career all at once. It put the focus squarely on fighting ALS.
"Before, I was obsessed with my music career, and now I'm obsessed with this. Instead of viewing it as a tragedy, I try to view it as an opportunity. I honestly feel I can't remember before this."
In his search for answers, Hobler met Jamie Heywood of Newton, Mass., who was already researching a cure for ALS. Heywood set up the world's first nonprofit biotech company after his brother, who is about Hobler's age, was diagnosed with ALS. Heywood told Hobler someone needed to bridge the gap between academic centers and drug companies by creating what he calls "drug discovery centers."
That would take money.
Hobler set out to build on Heywood's ideas. He brought Mike Schroeder on board as executive director of ALS Hope and tapped into a large network of friends and family to help.
So far, ALS Hope has raised about $1.7 million for research. Most of that has gone to open the ALS Hope Drug Discovery Center in Newton, which Heywood oversees.
Another grant went to Dr. John W. McDonald for his research on spinal cord injuries at Washington University. McDonald has taken the same regeneration treatment he pioneered and used on actor Christopher Reeve and applied it to Hobler.
He's got Hobler spinning 3,000 cycles on an exercise bicycle every day to reduce muscle spasms and to restore balance to his body. The adult nervous system has some capacity to regenerate, but it's limited, McDonald said. So patterned activity, such as walking and biking, is important for recovery from spinal cord injuries.
"He has a sense of hope," said Hobler, of McDonald's medical approach. "When you go to him, he says, 'I don't see why we can't find an answer to this.' I don't see that with my other doctors."
McDonald thinks the same about Hobler. "He's someone who definitely is not going to sit back and say, 'There's nothing to do,'" McDonald said.
And he's got plenty more ideas to restore hope in others. Hobler has drafted a bill that would provide incentives for donors to invest in orphan disease research through tax credits.
ALS Hope also will fund a biotech company for all rare diseases in St. Louis. The umbrella company, called The Orphanage, will teach organizations and individuals how to raise money and set up laboratories to study the diseases. Hobler maintains some hope that he can see all these lofty goals to fruition. Is that realistic? "Whether or not I'm unrealistic in my goals depends on how long I live," Hobler said. "I know I'm going to be OK. I know that once I'm OK, I'm going to continue to do this."
ALS Hope The Chris Hobler/ James Maritz Foundation
Goal: Provide support for patients with "orphan" diseases, including ALS.
Money raised: $1.7 million.
Next steps:
*Establish a new nonprofit biotech research center in St. Louis called The Orphanage.
*Form an ALS consortium to share research and raise more money.
More information: www.alshope.org
NOTES:
Reporter Jodi Genshaft: E-mail: jgenshaft@post-dispatch.com Phone: 314-340-8172
GRAPHIC: PHOTO; Color Photo by ANDREW CUTRARO / POST-DISPATCH - Chris Hobler breaks from work to let his son, Aidan, 3, work the computer in his office at ALS Hope The Chris Hobler-James Maritz Foundation on Friday. Hobler, who has ALS, established the nonprofit foundation that's raising money for research on Lou Gehrig's and other "orphan" diseases.
LOAD-DATE: October 21, 2002
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