Fighting ALS is personal and professional for UMass alumnus Scott Edelstein

When Scott Edelstein came to UMass Amherst as a freshman, his mother called him several times a day, mailed him care packages, and washed his laundry when he returned home for the weekend.

One day, Scott’s mom, Joyce, began to feel some minor weakness in her left hand, but she ignored it. Eventually she visited a doctor and was diagnosed with Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s disease. Four years later, Joyce, 55, is confined to bed, unable to speak, swallow or breathe on her own, and Scott now devotes himself, both personally and professionally, to combating ALS.

During the day, the 2003 UMass graduate works as director of special events and public relations for the Massachusetts chapter of the ALS Association in Dedham—one of the many charities supported by the UMass Amherst Community Campaign. In his time off, he helps care for his mother, who remains aware but can only move her eyes. There is no cure or effective treatment, but research has picked up dramatically in the past decade.

Scott’s work includes coordinating an annual walk and bike ride. Last year, 1,500 people participated in the walk, raising $160,000, and the bike ride raised $112,000. The money goes to running initiatives such as patient services, support groups and the equipment loan program, as well as a resource guide published for families. Since the disease moves so quickly, family members need a constant reference manual for when something goes wrong.

“ALS strikes at random,” says Scott. “It affects those who are in the prime of their lives, and paralyzes them from head to toe in a very short period of time. The disease doesn’t affect the mind or senses, so those with the disease become ‘trapped’ in their bodies. It’s an exhausting and difficult situation, and our agency truly makes a difference in the lives of families.”

The Massachusetts chapter of the ALS Association is just one of the many deserving organizations supported under the umbrella of the UMass Amherst Community Campaign. With an ultimate goal of $380,000, the campaign has almost made it to the halfway mark. “The more people who participate will help to meet our expectations,” said Elizabeth Tousignant, assistant director for events and programs in the Office of Public Affairs. To recommend your favorite charity or for more information, contact Tousignant or Gloria Fox at 577-1101.