Monday, October 19, 2015

EVENT NOTICE: Designing for ALS - This Wednesday!

Designing for ALS
Wednesday, October 21st
Institute for Human Centered Design
200 Portland Street, Boston MA

Few people take on the construction of a new home. And it would seem especially daunting for someone who has just learned that they have ALS. But that is just what Stephen Winthrop, his wife Jane Williamson and daughters Casey and Hannah, decided to do.

ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig's disease, is a neurodegenerative disease characterized by a progressive weakening of muscles in the body that can leave the patient unable to move, speak, eat, or even to move one's head. Some patients with advanced ALS communicate only by moving or blinking the eyes.

Jane and Stephen considered renovating their existing home but knew that its many levels and steep driveway would limit its renovation potential. Instead they chose to build a new "ALS-friendly" house elsewhere in their beloved Wayland and committed to use their experience to create a case study that they could share with others in similar circumstances.

They, with IHCD, assembled the necessarily large team. The Institute for Human Centered Design (IHCD) provided architectural design. The team included Keystone Development Corporation, Shepherd PMC, PEAC Automation Systems,Ergonomist and Physiotherapist Tucker O'Day, Priscilla Andersen Interiors, Dorma Doors, Toto USA. Steve Saling, a designer with ALS who assisted in the design of the award winning Leonard Florence Center for Living Green House® in Chelsea, and a partner in PEAC Automation, helped with design and technological solutions. Stephen and Jane and their two daughters recently moved into their new custom built Craftsman-style home.

Jane notes: "We are proud of what we are creating. This house is adaptive without looking institutional. It will extend not just the quantity of Stephen's life, but its quality, giving him as much independence as possible for as long as possible."

Stephen and Jane hope it will be a model home for not only ALS patients but also a far broader population of aging people living with mild to moderate functional issues.

Stephen and Jane, along with IHCD Architectural Designer Ruth Super, will share their knowledge and research gained during the process of creating their new home.

When: 12:00pm-2:00pm October 21,2015
Where: 1st Floor, 200 Portland st Boston MA 02114
To RSVP please contact Willa Crolius at or call 617-259-1655.

This event is FREE and open to the public, a light lunch will be served.

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