Compassionate care and helping hands
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
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