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ALS Worldwide
April 05, 2017

Architect Living With ALS For 10 Years Wants Others To Reclaim Their Lives

Steve Sailing, 48, has been living with ALS, amyotrophic lateral sclerosis (also known as Lou Gehrig's disease), for 10 years. The disease cripples the body but not the mind.

"To understand what it is like to have ALS, lay down and have someone tie a 50-pound weight to each foot and each hand," he says, via a computer-generated voice. "You try like hell to move, but you just don't make any progress."

Steve can move his head very subtly, but that's it. Most people in his condition wind up in traditional nursing homes, immobile, and completely dependent. But after his diagnosis, Steve, an architect, was determined to avoid that fate. So he designed the place where he and 19 others now live: the ALS Residence at the Leonard Florence Center for Living, outside Boston.

"I can open my door, control the lights, the window shade, the thermostat, the TV and home theater, and any electrical device anywhere in the room," Steve says.

"What Steve has accomplished using his eyes only has helped all these other individuals live a very meaningful, dignified life," says Barry Berman, the CEO of the Chelsea Jewish Foundation, the parent nonprofit of the Leonard Florence House and Steve Sailing Residence. "It's the only place in the world that we know of that has this level or service and care for individuals with ALS," Berman says.

But this home has only 20 spots, all funded by Medicaid and generous donors. The individual pays nothing. Berman believes this model could and should be replicated throughout the world, but most ALS donations go to researching a cure.

"I hope I live long enough to see a day when this disease is cured, but I think there has to be a balance of spending money and resources on research but also caring for individuals that are living this nightmare every single day," Berman says.

"There is a big difference between being kept alive and living a life," Steve says. "The ALS Residence is the only place in the world that I know of that provides the opportunity for people with ALS to reclaim their life and to live it to the fullest."

This video shows the ALS Residence at hte Leonard Florence Center for Living:

To read the full article, please visit…/architect-with-als-designs-residen….

ALS Worldwide applauds the efforts of Steve Sailing, the Chelsea Jewish Foundation, and all of the generous supporters that made this residence a reality. While the Leonard Florence House and Steve Sailing Residence may not be the right living situation for everyone with ALS, we absolutely agree with the idea that everyone living with the disease should have the opportunity to live and enjoy life to the fullest degree possible.