ALS Labs Tour at UMass Medical Raises Awareness of Fatal Disease and Hopkinton's Timlin 5K on June 18

At the end of March, the Sharon Timlin Memorial 5K Race invited people to tour the ALS research facilities at UMass Medical Center in Worcester.

ALS, amytrophic lateral sclerosis or Lou Gehrig’s Disease, is a neuromuscular degenerative disease that ends in death within two to five years of contracting it.

Peter Supp, a veteran research assistant and one of the tour guides at UMass Medical Center’s ALS research facility, said it was great to see people in the lab. It puts a face on some of those affected by ALS, he said.

Most of the job, Supp said, is staring at a computer screen, sifting through data, looking for clues to combat ALS. It'simpoirtant to remember that the job is foremost about people, he said.

For instance, researcher John Landers Ph.D said, you and I may have similar genomic maps except for a relatively small 3 million differences.

One difference among those 3 million could be the difference between getting or not getting ALS, he said.

Because 5,000 of the U.S.’s 310 million people get ALS each year, the disease is considered an orphan, Supp said. That means it doesn’t get the big bucks investments from drug companies that speed research.

That’s why the Sharon Timlin Memorial 5K, which is run by Abbie Rosenberg in association with the Hopkinton Running Club, is such an important fundraiser.

ALS kills. And even though just 5,000 people get it each year, you don’t have to scratch the surface too deep to find someone who has lost their dad or mom or child or friend to it.

Former Gov. Paul Cellucci said early this year that he has had it for about two years.

At UMass’s laboratories, researchers like Catherine Ward painstakingly knock out one protein after another to see what the loss of a particular protein does to a cell. It’s a test researchers can do in a lab, Ward said, but not a test that can be carried out on humans.

Researchers divide ALS into what they call "random" causes in more than 90 percent of people who get it. The remainder inherit a gene from a family member.

But as Ward said, some people are born with the gene mutation found in all ALS victims but never get the disease.

Researcher Nick Wightman tests combinations using more than 100,000 compounds to see if any of them have an effect on known progression patterns of ALS.

Researcher Will Stoothoff works with a kymograph to analyze microfluidics. He watches changes in people’s axonal transport, the movement in the body of sub-molecular information in cell neurons.

The touring crowd was filled with people from Hopkinton, whom the tour guides took through the labs in groups of about a dozen.

After the tour, hors d’oeuvres were served, a brief talk was given and visitors watched a short film about ALS and ALS research. Then Rosenberg thanked people for their efforts to combat ALS.

Sharon Timlin, who died of ALS, was the mother of former Red Sox pitcher Mike Timlin.

The 5K race named for her, which this year is on June 18, includes a family fun day, “races” for even the youngest children and people of any age or ability, and usually a few celebrities like David Ortiz (who posed for photos and signed autographs last year but did not run), U.S. Sen. Scott Brown and of course, Mike Timlin.

For more info, see www.sharontimlinrace.org , where you can register to participate in the race, make a donation, or find out more about ALS and the search for a cure.

There is also a video of some of the faces of ALS here, and profiles of those affected by ALS here.