Newtown Native Co-Coordinating ALS Fundraiser From His Bedside

By John Voket

A former Newtown resident and a physical therapist he met at a skilled care facility where he now resides are teaming up to co-coordinate an effort to raise funds and continued awareness for amyotrophic lateral sclerosis, which is also known as Lou Gherig’s disease.

Bob Murray, a patient at Bethel Healthcare Rehabilitation Center, and Tom Herbert, one of his many caregivers, are coordinating the effort to benefit the ALS Division of the Muscular Dystrophy Association (MDA).

Mr Herbert plans on joining the ALS Triathlon Team at this summer’s 2010 Nautica NYC Triathlon to be held Sunday, July 18. The event includes a 1500m Hudson River swim, a 40k bike ride along Manhattan’s West Side Highway, and a 10k run through Central Park.

The pair became fast friends in 2008 shortly after Mr Herbert took a position as a physical therapist at the local rehabilitation center.

“I decided to join the ALS Triathlon Team because of my friendship with Bob, but also because it is an worthwhile underdog charity,” Mr Herbert said. “Drug companies don’t put the same type of financial investments into clinical trials for ALS because it is not as common or as profitable as other diseases.”

Mr Murray moved from Newtown into Bethel Healthcare earlier that year after his medical needs relating to ALS became too difficult to manage at his home.

Mr Murray has been the subject of several features in The Newtown Bee in recent years, as he has attempted to balance his own care with what his friends, family, and caregivers have described as an “inspiring” desire to put a local face on the condition, while raising awareness and funds toward research to find a cure.

ALS has been known as Lou Gehrig’s disease since the world famous 1930s-era New York Yankee succumbed to the illness. It is a progressive muscle-wasting disease that attacks nerve cells in the brain and spinal cord, eventually affecting all voluntary muscles and resulting in paralysis.

The condition usually progresses rapidly, and the average survival time following initial diagnosis is three to five years. Today, individuals and families struggling with ALS rely on the generosity and support from private donations.

“Mr Murray is passionate about raising money for the ALS division of the MDA primarily because they have given him direct support since he was diagnosed with the disease in 2005,” Mr Herbert said. “Bob has received grants from ALS-MDA to fund a power wheelchair and a voice amplifier. These technologies have enhanced his quality of life, allowing him greater mobility and communication.”

Additionally, Bob feels that the assistance he has received from the organization has played a part in his surpassing the average survival rate of the disease, Mr Herbert added. The ALS Division of the MDA supports clinical research trials in an effort to find effective treatments for ALS.

Tom and Bob have raised more than $3,400 for ALS to date, and Mr Murray is calling on his friends and former Newtown neighbors and businesses to consider making donations before the July 18 Triathlon. Secure tax-deductible donations can be made toward the Murray/Herbert team via the web at www.joinmda.org/nyctri2010/therbs.