PatchWorx, a Nonprofit, Online Community Connecting Kids Dealing with Illness and Disability, Receives Top Grant
Menlo Park, Calif. - November 7, 2002 - PatchWorx™, a nonprofit, online community for young people facing illness and disability, received a three-year, $426,000 grant from the Department of Commerce's Technology Opportunities Program (TOP) to create a "Circle of Support Across America."
"More than a half-a-million children in the U.S between the ages of 5 and 18 suffer from a critical illness or a serious disability. Many are isolated and alone because they are hospitalized or home-bound and feel that only other youngsters facing similar challenges understand," said Teresa Middleton, PatchWorx president.
PatchWorx's online community, at www.patchworx.org, enables children to feel safe and secure to reach each other across the barriers of distance and disability to provide social and peer support, help develop coping skills, find information, and become more pro-active patients.
"I am grateful that I have a place to come where people understand and where I don't have to worry about my differences being so obvious. I don't know what I would have done this past year, or now, without this place," wrote one PatchWorx member.
The TOP grant enables PatchWorx to continue and expand the interactive online community started in March of 2000 with ongoing sponsorship from SRI International. During the three-year grant, PatchWorx will establish partnerships with Ronald McDonald Houses, children's camps, hospitals and schools around the country to serve as specific PatchWorx sites. These sites will identify children who will benefit from PatchWorx, facilitate parental permission, monitor participation and help recruit adult volunteers. The goal is to create a "Circle of Support Across America."
"A child in an online community is richly supported in the presence of others," said Middleton. "Messages fly back and forth. Questions are asked and answered. Poems, paintings and stories are read within hours, even minutes. Online, a child can be a full-fledged member of a vital, fast-paced community and develop the skills identified as necessary by researchers," Middleton added.
According to researchers in a 1996 American Psychological Association study, "Adaptation to Chronic Illness," problem-solving, seeking information and proactively recruiting social support are all skills that help people cope better with a chronic illness. Middleton believes PatchWorx helps develop these skills. Members can play leadership roles in building the PatchWorx community while strengthening their self-confidence and self-esteem.
Keara, a PatchWorx user with muscular dystrophy and asthma probably agrees. She wrote, "I am so glad I joined here because I already met a lot of neat people in the chat rooms and I think it is helping me deal with being sick so much."
The skills learned and the experiences shared in PatchWorx can be very encouraging. One member wrote of her best friend who battled cancer for 10 years. The friend was told she wasn't going to make it but is now in remission. She wrote, "For any of you reading this and going through it yourself, keep fighting!"
To make the PatchWorx community accessible, The National Cristina Foundation (NCF) is a principal partner in the three-year grant. Through NCF's Person to Person program, the foundation provides donations it receives of previously used technology contributed by corporations and the public to organizations that provide online links to young people who are facing illness and hospital stays. In support of the PatchWorx community, NCF will supply donated computers and other technology for children who need them.
PatchWorx includes "ChatWorx," a series of regularly scheduled and moderated chats where children can feel safe while have fun sharing stories and ideas to give and get the connection and support of others.
A Questions and Answers section of the site called "Ask Patches," is where the PatchWorx mascot deals with serious to lighthearted matters. A "Show and Tell" area of the site gives members a platform for their talents. The following poem was shared by one PatchWorx member:
Whether you are out and about,
Stuck in a hospital or at home
I know of a friendly place you can go
Where you are no longer alone
On arrival you are greeted with a smile
From Nessa, Teresa and Moondancer too
Plenty of hugs and advice from Elle
DK, Piggo, and Lucy to name just a few
Wet kisses from Patches and hugs from a friend
Where's this fab place I hear you say
Its at patchworx.org
I hope to see you one fine day.
"This poem sums up why we want to build the PatchWorx circle of support across America," Middleton said.
About PatchWorx, Inc.
PatchWorx, Inc., is a non-profit, web-based online community for young people who are feeling isolated due to a serious illness or disability. The website and community provide a safe, secure and fun place for kids to share stories and ideas, laughter and tears, to learn from each other, and make friends with common interests. For additional information on PatchWorx, please email inquiries to patchworx@patchworx.org or contact Teresa Middleton at 650-859-3382 or Lori Telson at 408-984-1305.
About TOP awards
The Commerce Department's National Telecommunications and Information Administration awards the annual Technology Opportunities Program (TOP) grants. The 2002 TOP awards, totaling $12.4 million, were matched by $13.6 million in contributions from the private sector and state and local organizations. The grants demonstrate how information technology can address public concerns over areas such as housing, safety, economic development, and e-government.
About SRI
SRI International (http://www.sri.com/) is one of the world's leading independent research and technology development organizations. The nonprofit research institute performs contract research and development for government agencies, commercial businesses and private foundations.
About National Cristina Foundation
National Cristina Foundation (NCF) provides computer technology and solutions to give people with disabilities, students at risk and economically disadvantaged persons the opportunity, through training, to lead more independent and productive lives. Every day, across America and around the world, National Cristina Foundation is working to ensure that used computer technology resources that no longer meet an enterprise's needs are given a second productive life as a tool for developing human potential.
For more information, please contact:
Teresa Middleton
Lori Telson
(650) 859-3382
(408) 984-1305
