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

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.”

The first seeds of what a retreat could offer to families dealing with ALS were planted in the spring of 1999. While caring for Heald, Hoffman noticed a small, modest waterfront cottage on the Heald property and asked Betsy, Gordon’s wife, if he could bring another ALS  family to stay in the cottage for a weekend, just to get some relief and a change of environment. After that weekend, seeing the effect on the family and the lasting memories, Hoffman knew he needed to one day find a dedicated space. Fast forward to 2014, as fate intervened while Hoffman was walking his dog Moses on the bike path in West Falmouth and discovered that the Beach Rose Inn was on the market, followed immediately by the revelation that a recently departed patient had left a bequest of $50,000 to realize the dream of a retreat.

Hoffman’s two decades of being involved with ALS has created a circle of individuals who have been touched by a shared test of spirit. Many of those people have stepped up to the challenge to meet everything required to bring the vision of this center to fruition. The disease personally touched Ralph Cataldo when a close friend on his hockey team was diagnosed with ALS. “When we lost Doug in 2014, I felt like I had to get involved in some way to honor his life and his difficult battle,” Cataldo says. “I have been building on the Cape for decades, and never before have I seen so many contractors and generous individuals commit to something so strongly. This is the right time to make this center a reality.”

Chris Lambton, a local landscape professional from Dennis who first gained nationwide exposure in 2010 as a contestant on ABC’s The Bachelorette, lost his mother, Marjorie, to an ALS-like disease in 2008. “Ron was invaluable to my family and is now considered part of my family,” Lambton says. “Anything I can do to repay everything he did for us, and benefit other families that are going through the disease now, is my honor.” Lambton is involved in transforming the property’s grounds to create a reflective, healing environment for families to find their own solace.

Falmouth architect Denise Bonoli became involved in the project in 2001, the early days of Hoffman’s conception of the center. Bonoli designed the architectural plan based upon their 15-year discussions. “I’ve worked with Ralph for many years and would of course try to do most anything Ron would ask. But, because this project is so special, and has the potential to positively touch so many lives, I would have been part of it regardless of who asked,” Bonoli says.

Neuroscientist-turned-novelist Lisa Genova, author of Still Alice, who has gained fame for her sensitive and insightful treatment of difficult diseases such as Alzheimer’s and Autism, is working on her next novel, Diminuendo, about a concert pianist diagnosed with ALS, due out in early 2018. She and Hoffman connected through the auspicious Mass General ALS Multidisciplinary Clinic. “Ron is such a warm and caring individual—everyone who meets him understands that immediately,” Genova says. “What CCALS provides for families dealing with ALS—hands-on, mobile access directly to the patients for whatever they need—isn’t a model found anywhere else, across any other disease or organization.” Genova says that her books are instruments that educate and provide awareness to readers who lack understanding of the various diseases in her novels. The opportunity to start conversations about these difficult challenges is one she is grateful to initiate. “You may not have a conversation about ALS over a glass of wine at a cocktail party,” she says, “but you certainly might over a glass of wine at a book club meeting.”

As people venture along the Shining Sea Bikeway in West Falmouth in the future, they may notice what once was a bucolic bed and breakfast that welcomed families and couples to the Cape for fun and relaxation. Now, the Compassionate Care ALS Education and Retreat Center will continue to welcome families to still experience the wonders of the Cape, but now they may leave with a greater strength and understanding of how to cope with the difficult days ahead—thanks to many committed members of the Cape Cod building community.

To learn more about Compassionate Care ALS, visit ccals.org