Sophia's Garden Foundation

H E A L I N G I N C O M M U N I T Y

Healing in Community Online ™

Sophia’s Garden Foundation/Qwaq Case Study

Sophia’s World
Sophia Herzog Sachs was born in 2001 with Niemann-Pick Disease, Type A,
a rare and incurable genetic disorder. At the age of 10 months, she was
diagnosed with the disease and her parents were told that she would only
live to the age of 2 or 3.

As Richard Sachs and Karen Herzog began their journey of coping with Sophia and their family’s needs, they
discovered that our present healthcare system did not meet many of the physical, emotional, spiritual and finan-
cial needs that arose. What happened over the next four years was nothing short of extraordinary. Drawing upon
their backgrounds in sales and high-tech marketing, they began to reach out for help. The response amazed
them. Individuals and groups from all walks of life and fields of endeavor were drawn into what became a
palpable circle of healing. Moved by Sophia’s radiant presence and the family’s
optimism and openness, as well as inspired through the experience of com-
munity, people began to respond in unprecedented ways. The walls between
people, disciplines, and geographic boundaries dissolved—fostering collabo-
ration, compassion and creativity. The level of integrated care that Sophia
received rose exponentially. In this supportive, family-centered environment,
people’s hearts were free to break open, and a healing community was born.

Karen and Richard believe that those who participated in this community over the four years of Sophia’s life did,
indeed, experience their time with her as an opportunity for growth and healing. They wish to offer the open-
ness and collective wisdom of Sophia’s healing community to others so that we all might learn how to better care
for children with life-threatening conditions. They see this as Sophia’s legacy to the world.

Healing in Community™ Online

Imagine a world where such families are not alone—a world where
the collective healing wisdom of humanity is accessible to all, especially
children thought to be incurable, and where families find strength, hope
and healing through their communities. Karen and Richard formed
Sophia’s Garden Foundation (SGF) and it’s first initiative is to create
an integrated, Web-based survival kit for families of children diagnosed
with life-threatening conditions, Healing in Community™ Online
(HICO), that informs, supports and enables families to harness the
power of community to address all of their needs—physical, emotional,
financial, social, cultural and spiritual.

In the Spring of 2006 Karen and Richard began to look at ways to create these healing communities using new
Internet technologies (Web 2.0). With a team of expert advisors they conducted an exhaustive study of a wide
variety of open source and hosted technologies that might help them implement their vision of HICO. In the
spring of 2007 they saw a demonstration of Qwaq Forums, a new 3D collaborative environment created by
Qwaq, Inc. Based on the open source Croquet Project, Qwaq Forums was more oriented towards the security
requirements of business use than other virtual environments like Second Life and it offered some critical
collaborative520
capabilities not found in other virtual
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Qwaq Forums was designed to significantly enhance the productivity of distributed teams by bringing criti-
cal resources together in a virtual place, as if they were in the same physical location, and would provide team
members with all the tools and collaboration capabilities they needed to work more effectively together. For ex-
ample, with Qwaq Forums, HICO users would be able to collectively establish workflow steps, create or review
information in software applications, and evaluate information in 2-D and 3-D, all while discussing topics using
built-in text and voice chat. The other important benefit of using Qwaq Forums for the HICO project was that
the HICO spaces would always be available; users could return to the environment any time to view changes
or to continue working or collaborating.

A Virtual Mirror World

The HICO project team envisioned HICO as a virtual world that would mirror everyday life, where families
could work, share documents, and meet with family, friends, health care practitioners and others using chat and
voice communication. Just like in their real world, families could collaborate in private meetings, or talk infor-
mally in a secure environment. Unlike the real world, in HICO, the community could be built and maintained,
unlimited by time and geography.

Greg Nuyens, the CEO of Qwaq pledged resources and support to help
the HICO project, and over the summer of 2007, Karen, Richard and
the HICO project team decided to create a HICO prototype in Qwaq.
With a set of “user stories” and roles for those that would be using
HICO, they began to build a town online using Qwaq as the frame-
work for building a series of rooms designed to help with some of the
HICO functions. They focused on “Taylor,” a 12-year-old child with
cancer, his parents, Bill and Sylvia, and his health care providers to give
potential users of HICO an idea of what they could expect in this
community. By the fall of 2007, Karen and Richard were demonstrating “Taylor’s world” to health care and
technology audiences in the San Francisco Bay Area.

Each member of the community has a simple avatar that lets you and
others know where you are at all times. A variety of animated coaches help
to train and orient the community. Taylor’s parents navigate his care and the
family’s needs using the same desktop and web applications that they’re used
to, yet in context in a secure environment. Coupled with a familiar spacial
layout, presence indicators provide social cues that enhance collaboration. In
HICO, Bill and Sylvia can browse a web site like Daily Strength, an online
health network, to find other parents in similar situations, with whom they
can connect and invite to be part of their HICO community.

Taylor’s room is an online space that he can make his own (see the pictures
on the wall that Taylor used to decorate his room). A coach (another screen
in the room) reminds him on entry not only to keep his room clean, but
also to make sure he does his homework and takes his medications. Using
one of the screens in his room Taylor, who is bed-bound in the hospital, can
work on his current homework assignment with some of his friends from
class. All of this is easily done in Qwaq, which allows you to drag-and-drop
documents from your desktop to be shared in Taylor’s room.

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Qwaq also allows Taylor’s parents to consult with their doctors and other health care providers on a regular
basis without having to endure long and expensive drives to the hospital. The Children’s Health Center has the
trusted look and feel of a real medical room, with the added benefit of being open for visits 24/7. Similar to a
face-to-face appointment, in this medical exam room the doctor can show Taylor’s parents his latest X-rays, and
additional information about Taylor’s disease. Because it is an interactive environment (using text chat and VoIP)
Taylor’s parents and the doctor can talk about Taylor’s condition and progress without any telephone charges
and present much more complex information than they could over the phone and through email.

Next Steps
Although SGF is still prototyping HICO and looking for seed funding, the next step is to start to populate
the environment with members of the Sophia’s Garden community to get their reactions to the environment.
Once that is done, and with some additional funding and resources, SGF will open up this environment to
a few families that currently have terminally ill children for a test drive of HICO.

About Sophia’s Garden

Sophia’s Garden Foundation is creating and proliferating a community-based approach to healing, Healing in
Community™, as a compassionate and highly effective way of caring for children with life-threatening conditions,
and as a way for families to take charge of their child’s health care and to improve the quality of life, lengthen
life span and ultimately find cures.
www.sophiasgarden.org

About Qwaq
Qwaq Inc. is creating virtual spaces for the enterprise that enable collaboration in ways that weren’t possible
before. Qwaq Forums, the company’s first product, is a secure virtual workspace application that significantly
increases the productivity of distributed teams by bringing critical resources together in virtual places, as if they
were in the same physical location. A highly interactive and persistent environment, Qwaq Forums enables users
to work, collaborate with others, and identify and solve problems. Qwaq’s founders, executives and advisory board
members are all seasoned technology industry veterans and thought leaders with extensive experience working
together to build successful companies.

www.qwaq.com

520 El Capitan Place, Palo Alto, CA 94306 P:650.813.0895 F:650.813.0896 www.sophiasgarden.org

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