about us
who we are
news & events
view our calendar
resources
lists & links
join us
how you can help
contact us
National TWC leader applauds local initiative
The national president and ceo of The Wellness Community applauded efforts of local leaders to establish a Wellness Community for Silicon Valley during a recent (Oct. 16) stop in San Jose.
The local effort, launched by Rusty and Pamela Hammer, Karen Storey and Steve Tedesco, is “really, really close” to completing its first phase of fundraising, Storey told a gathering of supporters and representatives from other cancer-related nonprofits and professional organizations, including the American Cancer Society. The first-phase goal, $50,000, is required to join the national TWC network.
Currently, there are 27 Wellness Communities around the world.
The power of empowerment
The Wellness Community was founded in1982 in Santa Monica by Harold Benjamin, who was inspired by the experience of his wife, Harriet, who had received a cancer diagnosis. Despite all the medical care she received, he was bothered that “no one’s talking about her mortality,” Kim Thiboldeaux, TWC’s president and ceo, said. “And yet she was focused around the idea that she may die.” Benjamin dove into research, and developed the “patient-advocate concept,” a fundamental tenet of TWC. Rather than taking a passive approach, patient-advocates are informed and empowered to participate actively in treatment decisions.
“People who are empowered can have an impact on the outcome of their disease,” Thiboldeaux said. “By being connected with others, you can improve your life.”
Harriet Benjamin today is a 34-year cancer survivor, Thiboldeaux said, “an amazing inspiration to us.” She sits on TWC’s national board.
What research shows about TWC
TWC offers a wealth of resources that provide education, support and, with that, hope. TWC support groups give individuals and caregivers a safe environment to talk about even the most sensitive issues. The support groups are facilitated by trained professionals. In addition, TWC works closely with academic institutions, including Stanford University, on continuing research, particularly around survivorship. A randomized study with Stanford has shown:
-
TWC has been effective in helping individuals develop a new attitude about their illness, particularly regarding concerns that are not addressed by the health-care system. At TWC, “people learn to find meaning in their illness,” Thiboldeaux said. “We give people the framework to explore that.”
-
TWC gives people the opportunity to be more effective in decision-making. “We help people think about their lives,” she said, especially regarding the “long-term … what’s important to them.” TWC helps people find resources. “There’s lots of data out there.” But it’s not always easy to find data that’s reliable, she noted. TWC’s research shows that people don’t trust insurance companies or pharmaceutical companies, she added.
-
TWC helps participants improve their relationships with their health-care team, and teaches people how to get the most out of the limited time they can spend with their medical team.
TWC's virtual community
Last year, 30,000 people made 200,000 visits to Wellness communities. “We continue to grow and evolve our programs based on what people are telling us,” Thiboldeaux said. In the ’90s, people everywhere were rushing online to do things for people with cancer. “We said, maybe there’s more. … Can we run support groups online?’” Now, after studying the question, they do. Those groups are closed, password protected, done in real time. One study reviewed the effectiveness of such an electronic support group with women with cancer. The results showed, among other things, a decrease in pain, anxiety, and depression among the participants, and an increase in their zest for life.
Such research results have given rise to TWC’s virtual community, which offers services borne out of leveraging relationships with partner organizations and academic institutions. People from 23 countries now participate in TWC’s virtual community. “We have seamless delivery to people in the cancer community. That gives us such great hope about the work we are doing together.” Currently, TWC is raising funds for a survivorship research and training center in Philadelphia, Thiboldeaux said.
Thiboldeaux talked briefly about TWC’s unique structure. Each center is an independent 501 (c)(3) organization. The national office focuses on quality assurance in the centers, and has 117 quality measures. “At the end of the day, with everything we do, we ask, ‘Is this in the best interest of people with cancer?’”
'The Switzerland of oncology'
TWC seeks to partner, rather than compete, with other entities that assist people facing cancer. “TWC is the Switzerland of oncology,” she said. “If we partner with one hospital, we seek to partner with them all.” Collaboration is a core value, she added, and TWC wants that to happen regionally. “I think we have a lot of interesting programs that capture people’s attention.” One distinguishing feature is service for caregivers, a group too often ignored. Often caregiver support groups are much more emotionally charged, she said. The patient can say, “I don’t feel well,” “I’m not going to go to work,” “I’m scared,” “I’m angry,” she noted. “The patient has permission to say all those things. The caregiver does not.” But the caregiver support group offers a safe environment.
Thiboldeaux shared the story of one caregiver whose wife was dying. “The past year of our marriage has been the best year of our marriage,” he confessed, adding, “Can you imagine that?” He – and his wife – had found solace and strength in the Wellness Community, which enabled them to reframe their concerns, freeing them to talk about what mattered.
The California connections
Rusty and Pamela Hammer said they were inspired to start a Wellness Community in Silicon Valley because of the important support they have received from TWC in Pasadena. At the time, they lived in the Los Angeles area, and Rusty was president of the Los Angeles Chamber of Commerce.
The only other Wellness Community in Northern California is in Walnut Creek. That Center has provided important and welcome mentoring to the local effort, said Storey, the vice chair of the committee to establish a Silicon Valley Wellness Community. Thiboldeaux praised the efforts and said the national TWC encourages regional cooperation.