(Republished with permission from the St. Louis Post-Dispatch. This article originally ran in the Science & Medicine section on Tuesday, October 5, 2004)
By Tina Hesman
Of the Post-Dispatch
Chris Hobler has a plan to find cures for neurological diseases fast.
The singer and songwriter has a personal stake in the matter. Hobler has amyotrophic lateral sclerosis, often called Lou Gehrig’s disease or ALS. There is no cure for the fatal disease, but Hobler intends to mine success from research on other brain disorders to produce treatments for ALS. Along the way, scientists also may discover cures for Alzheimer’s disease, Parkinson’s disease, multiple sclerosis and other disorders of the nervous system.
Hobler’s foundation, ALS Hope – The Chris Hobler/James Maritz Foundation, is teaming with Washington University to create a new basic science research center dedicated to finding the causes of debilitating brain diseases and their cures.
The foundation, which is changing its name and mission, will give the university $1 million to set up the Hope Center for Neurological Disorders, kicking off a multimillion-dollar fund-raising effort. The center will provide resources, grants and intellectual stimulation to researchers working on diseases that affect the brain and spinal cord.
The shift to funding multiple diseases is reflected in the organization’s decision to change its name to “Hope Happens,” Hobler said. The foundation plans to announce its name change and the establishment of the Hope Center this afternoon at a reception at the Center for Advanced Medicine at Barnes-Jewish Hospital.
It’s a brave move, said Dr. Mark P. Goldberg, director of the Hope Center.
“It’s easy for someone who has MS or ALS to say, ‘I want to put all my resources into my disease,'” Goldberg said. “It takes a much bigger vision to realize that sharing resources among many diseases can produce results.”
Ideas generated by research on one disease could spark discoveries in others, said Dr. David M. Holtzman, head of the neurology department at Washington University. Although the diseases have different causes – genetic defects, injury, immune-system attacks or the buildup of harmful proteins – nerves follow many of the same paths to death or recovery, Holtzman said. With collaboration, researchers investigating different brain diseases are likely to find ways to stop nerve death and promote healing faster than they would be able to working alone, he said.
Speed is of the essence for Hobler and other people with neurological diseases, but the wheels of scientific progress can turn frustratingly slowly.
“When I was diagnosed with ALS in June 2001, I had a different reaction than most,” Hobler said in an e-mail. “I had an advantage. I grew up with ALS. My grandfather had ALS for 14 years. I understood what my diagnosis meant. I also understood that nothing had changed in the last 30 years. No cure, no treatment, no hope.”
The lack of progress angered him.
“I knew the reason had more to do with money and publishing than science,” he said. “I think my life is worth saving. The fact that ALS was viewed as unprofitable by the pharmaceutical industry, and researchers don’t share results because of proprietary publishing and tenure, did not sit well. My voice was gone, my career as a singer-songwriter was over. I wanted to fix the system that had made no progress in 30 years. My immediate reaction was to call my family and say I wanted to start my own lab.”
Instead, Hobler founded ALS Hope to raise money to support research that could lead to a cure. The foundation funded research at academic institutions and companies. But breakthroughs in the laboratory often take decades to reach patients. That’s a lifetime, sometimes several lifetimes, for a person with a degenerative nerve disease.
“Because my life hangs in the balance, I find many of the systemic restraints that slow the research process down inexcusable,” Hobler said.
The Hope Center will require its members to share data, ideas and equipment. The center does not have one physical location, but four core components – an animal research core, a molecular biology core, an imaging facility, and an outreach and information core – will bring scientists together.
The facilities are designed to give scientists research tools they might not otherwise have access to, Goldberg said. The animal research facility will provide scientists with rats and mice that are genetically engineered to get neurological diseases, Goldberg said. The imaging facility contains powerful laser-powered microscopes that can peer into the brains of living creatures. The molecular biology facility will help create viruses for gene therapy. And the information core will organize seminars, including a national summit on neurological diseases.
In the highly competitive world of science, researchers often hold results close to the vest to prevent others from stealing ideas. But secrecy can impede rapid scientific progress, Hobler said.
Geneticist Alison Goate plans to initiate a search for the genes that put people at risk for getting ALS. She sees an advantage to sharing samples and data.
“If you share your data at an early stage when other people can replicate them, you find out quicker whether you’re going down the right path or a blind alley,” Goate said.
And the investment makes economic sense, Hobler said. Pooling resources will allow researchers to act quickly on discoveries and stretch funds, he said.
Private money allows researchers to try things that more restrictive government grants wouldn’t allow, Holtzman said. The Hope Center will give grants to researchers for preliminary research and established projects. Some of the grants may go to researchers outside Washington University, he said.
The university announced Monday that it would move clinical trials for neurological diseases to a central facility, called the neuroclinical research unit. A $1.6 million grant from the National Institutes of Health and matching funds from Washington University will pay for the renovation of a 14,000-square-foot facility in the McMillan and Irene Walter Johnson buildings at Barnes-Jewish Hospital, said Dr. Joel Perlmutter, director of the neuroclinical research unit.
The facility, which will open in 12 to 18 months, will include office space for researchers, examination rooms, testing areas, interview rooms for social workers, and a kitchen and bathroom area where patients can practice daily living skills.
“This is people-oriented research,” Perlmutter said.
The researchers don’t expect to find cures for neurological diseases immediately, Goldberg said. He doesn’t want to oversell the center or offer false hope, he said.
“But I know for sure that we’re going to discover things we weren’t expecting to discover.”
Reporter Tina Hesman
E-mail: thesman@post-dispatch.com
Phone: 314-340-8325
Copyright 2004 St. Louis Post-Dispatch, Inc.