Med School Fundraiser Swings Big | Former governor spearheads ambitious campaign to fight ALS
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ON THE MOUND: Former Gov. Paul Cellucci, center, who's been diagnosed with ALS, took to Fenway in Boston to announce a major fundraising campaign for the University of Massachusetts Medical School in Worcester. He is joined on the field by UMass Medical School Chancellor Michael Collins, left, and Dr. Robert Brown, right.
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SEEKING DISCOVERIES: Dr. Robert Brown leads the lab at UMass Medical School that focuses in part on researching the degenerative disease, ALS.
Michael Collins, chancellor of the University of Massachusetts Medical School in Worcester, said he had one of the top-10, best meetings of his career recently.
That meeting came when Collins and the medical school were approached by former Gov. Paul Cellucci about starting a $10-million fundraising campaign to support ALS research at the school. Cellucci is being treated for ALS, also known as Lou Gehrig’s disease, at UMass Medical.
“It’s an incredibly selfless act by a patient who is facing some really challenging circumstances,” Collins said.
Now the pressure is on for the medical school, and principally the school’s top ALS researcher Dr. Robert Brown, who is also Cellucci’s doctor, to help find answers related to the mysterious, and fatal, disease.
Up To The Challenge
If anyone is going to get a possible $10 million infusion of cash to study ALS, Brown seems like a good candidate, according to Amelie Gubitz, who is a program director for the National Institutes of Health, the federal government agency that provides research funding for a spectrum of disorders.
“There are good research teams across the entire country, and UMass Medical School is one of those with a very strong, creative and productive group researching this disease,” said Gubitz, who is one of the gatekeepers of federal dollars that are made available for ALS and other neurological disorders.
A 1975 graduate of Harvard Medical School, Brown also holds a doctorate of philosophy in neurophysiology from Oxford University and a degree in biophysics. He came to UMass Medical School in 2008 from Harvard to chair the school’s neurology department and head up its neurodegenerative division, which he said now has between 50 and 60 researchers working in it. The lab focuses not only on ALS, but other disorders of the brain including Parkinson’s, Alzheimer’s and Huntington’s diseases.
ALS, however, is the one that Brown focuses his efforts on.
The disease was first discovered in the late 19th century, but only became famous when former New York Yankee slugger Lou Gehrig was diagnosed with it.
Today, an estimated 30,000 Americans have ALS, with about 15 new cases diagnosed each day, according to the National ALS Association.
The disease causes the neurons that control muscle movement to die. Patients begin to lose the ability to control their extremities first, then the limbs, and it can eventually be paralyzing. All this happens while the mind’s ability to think and feel is not impacted.
The disease is usually fatal and the prognosis is not promising. Half of those diagnosed die within three years, 20 percent live five years and only 10 percent of patients live more than 10 years. Some, however, beat the odds. Stephen Hawking, one of the world’s leading theoretical physicists, has a form of the disease, which doesn’t allow him to move any muscles, but has not inhibited him from being a leader in his field.
Seeking Breakthroughs
Much is still unknown about the disease, but that’s changing quickly.
In recent years research has focused on the causes of the disease. One of the most perplexing things about it is its complexity, according to Gubitz. While researchers believe they have found a gene mutation that could be responsible for about 20 percent of ALS cases, that still leaves 80 percent that are a mystery. Recent research has focused on the causes of the disease, which Gubitz said is the first step toward creating therapies to slow the effects of ALS on patients. At least two late-stage human clinical trials are expected to begin soon studying therapies.
Meanwhile, Cellucci is doing his part to help UMass Medical School researchers crack any new clues that they can.
Despite being diagnosed within the past two years, Collins said Cellucci, a former ambassador to Canada, is in good spirits and has not slowed in his efforts to support research for the disease.
Organizers of the fundraiser, named the UMass Champions Fund, will be soliciting donations through a website (www.umassals.com) and Collins said organizers are looking for a combination of large-scale donations combined with as many small donations as possible.
To help get the word out, Collins and Cellucci threw out the first pitch at a recent Boston Red Sox baseball game and were featured on the television broadcast of the game encouraging Red Sox Nation to donate to the cause.
But for those at the medical school, it’s about more than just raising money. Money from this fund could be a “game-changer,” Collins said.
“This could be a transformative moment, not only now, but the spin-outs it will create in the future,” he said.
The plan to raise $10 million is “ambitious,” but realistic, Collins said. An endowment fund will be created, which will ensure that the money can be maximized over an extended period of time.
Having unencumbered funds gives researchers like Brown additional flexibility as well. Grants from the federal government and private organizations are helpful, but can come with tight restrictions on what the money can be used for.
With the money from the endowment, there could be opportunities for Brown to pursue higher-risk, yet potentially higher-reward studies. Sometimes, Brown said, that’s what’s needed in medicine.
“We’re looking for that eureka moment,” Brown said.
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