Chelsea home takes national lead in care for ALS patients
By Kristin Erekson
Jewish Advocate August 16 2007
In an exclusive interview with the Advocate, Barry Berman, executive director of the foundation, unveiled plans earlier this week to build 10 state-of-the-art rooms equipped with technology specially designed for individuals of all ages with amyotrophic lateral sclerosis (ALS). Also referred to as Lou Gehrig’s disease, ALS is a progressive neurodegenerative disorder that affects nerve cells in the brain and the spinal cord, and often leads to paralysis and, in some cases, death.
The ALS-friendly spaces, which are expected to contain one person per room, will be housed in the Leonard Florence Center for Living, an urban skilled nursing care facility for 100 residents. According to Berman, the Chelsea-based center follows the progressive Green House® model, a concept that focuses on providing residents of all incomes with more dignity, autonomy and long-term care in a non-institutionalized setting.
Construction on the building is slated to begin by the end of the calendar year.
“The cruelest part of [ALS] is that every muscle in the body goes, but the mind stays alert,” Berman said. “Right now, there are individuals with the disease living at home, living in nursing homes, living in chronic hospitals and they are sort of bed bound because of their disability. But in our home, these individuals, because of the smartest technology, will be able open the door in their rooms, sit in the garden by themselves and control their environment.”
Berman added that the ALS home’s cutting-edge technology, such as general automation systems and eye movement-controlled computers, will be created by electrical engineering students at the University of Massachusetts Lowell.
“[Designing specialized equipment] is something we have been doing for years and I enjoy being able to help people and to train engineers to become better engineers,” said Alan Rux, a UMass Lowell professor of electrical engineering who is overseeing the partnership with the foundation.
According to Rick Arrowood, CEO of the Massachusetts chapter of the ALS Association, the Chelsea Jewish Nursing Home Foundation is taking the lead in caring for those with Lou Gehrig’s disease, as there is no similar type of housing in the U.S. Approximately 30,000 people nationwide – 1,200 people in Massachusetts – are stricken with the incurable disease, Arrowood said.
“The new ALS house is just one more way for us to improve the quality of life for these individuals in absence of cure and treatment,” added Arrowood, who noted that he and Berman will be working together to create a lottery system determining who will receive a spot in the ALS apartments.
Arrowood said he believes a facility like this has never previously been built in the U.S. because of the “enormity of the project.”
“I think, if anything, the cost involved is certainly a part of it,” he added.
Having rolled out a $25 million capital campaign for the construction of the Leonard Florence Center for Living, Berman added that there is still a long way to go since only $18 million has been raised to date. An additional $5 million is also needed to finance the equipment necessary for the ALS floors in the center.
“We don’t expect [our ALS patients] to pay for this,” Berman said. Earlier this summer, Jewish philanthropist and casino mogul Sheldon G. Adelson along with his wife, Miriam, made a $5 million contribution to support the development of the new 85,000 square-foot nursing facility. The campus on which the center will sit has been named in honor of the Adelsons.
The Leonard Florence Center for Living will consist of 10 self-contained “houses” stacked within a five-story building. Each room, which will be arranged around a common living room, dining area and open kitchen, will have its own private bath and shower.
When asked by the Advocate why he decided to take on such a daunting task as the ALS house, Berman said he was doing it in memory of the late Leonard Florence, a Jewish philanthropist and former member of the Chelsea Jewish Nursing Home’s board of directors.
“This house for ALS residents epitomized who Lenny was,” Berman added. “He always encouraged me to care for the most vulnerable citizens in need.”
Leonard’s daughter, Faye Florence, echoed Berman’s beliefs. “Dad supported many worthwhile endeavors and always felt that it was important to ‘give back’ and help those in need,” Faye said. “The ability to create houses devoted to enhancing the quality of life for those individuals afflicted by ALS would be something that Dad would have been honored to be a part of.”
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