Cape building community bands together to create a retreat center for those coping with ALS

Compassionate Care and Helping Hands, Early Summer 2017 Cape Cod HOME | capecodlife.com

Architectural renderings furnished by the late Gary Irish

The summer of 2015 saw a wave of commitment sweep the country as the Pete Frates’ “Ice Bucket Challenge” gained unexpected momentum in the collective social conscience. Television clips, printed articles, social media postings and shared videos showed celebrities and average individuals alike pouring freezing ice water over their heads as they challenged friends and strangers to respond in-kind, all in hope to raise awareness for the pernicious disease ALS.

Also known as Lou Gehrig’s disease, Amyotrophic Lateral Sclerosis first gained public notoriety when arguably the greatest baseball player in the history of the sport stunned the world as he voluntarily retired in 1939 after being diagnosed with the disease. ALS is an incurable, neuromuscular disorder that debilitates patients with gradual muscle weakness and incapacity until their death. The tragedy of the disease is heavily shared with the caregivers who aim to support their loved ones as the disorder runs its course.

Across the country, various chapters and organizations that provide support, services and awareness for families battling the disease understand the difficulties that lie ahead for those receiving their diagnoses. One of those organizations on Cape Cod, Compassionate Care ALS (CCALS), based in West Falmouth, exists to assist those living with ALS, their families and their communities and has been providing that care for over 20 years. Thanks to Ralph Cataldo, of Cataldo Custom Builders in Falmouth, who is coordinating an army of volunteer companies from the local building industry, Compassionate Care will have a new facility to offer refuge to families stricken by ALS.

In the fall of 2017, the future home of the Compassionate Care ALS center will open its doors at the site of the former Beach Rose Inn in West Falmouth. Once complete, the Education and Retreat Center will meet the needs of individuals living with ALS, their families and their caregivers by improving access to ALS information and resources. Ron Hoffman, founder and executive director of CCALS, says that when he took care of his first patient, Gordon Heald, he sensed something was missing. “A month before Gordon passed away, I knew there had to be a different way of dealing with the disease,” Hoffman remembers. “All of the information we were getting from a vast variety of resources didn’t seem relevant. At the time, I wasn’t sure what we were searching for, but I knew the information we had been provided was not meeting the challenges we were dealing with.” When pressed for what he and other caregivers needed, Hoffman cites the red tape of large national organizations and clinics as being the antithesis of what patients and families need in their battle against this ravaging disease.

“One of the things I have learned over two decades is an understanding of how one lives with a fatal illness, and how one dies,” he says. “Those are difficult issues to address, and they are handled differently by different people. Additionally, the caregivers have their own feelings and expectations to reconcile within the journey of care, and that is one element of support we will aim to provide with our new center.”