Cancer Support Community

Cancer Support Community

Cancer Support Community Logo
Type	Non-Profit
Founded	1982[1]
Founders	Harold and Harriet Benjamin,[1] Gene Wilder, Joanna Bull[2]
Headquarters	Washington, D.C.[3]
Areas served	United States, Canada, Israel and Japan
Key people	Kim Thiboldeaux (CEO), Jill Durovsik (Board Chair), Linda House (President)[4]
Website	http://www.cancersupportcommunity.org

The Cancer Support Community, or CSC, is the largest professionally led nonprofit network of cancer support worldwide.^[5] CSC provides emotional and social support to people affected by cancer through its affiliate locations across the United States and worldwide, as well as online and over the phone.^[6] CSC was founded in 2009 from a merging of Gilda's Club and The Wellness Community.^[7]

History and Mission

CSC’s mission is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community. This mission is accomplished through direct service delivery, research and advocacy.^[8]

The Cancer Support Community formed in 2009 following the merger of The Wellness Community and Gilda’s Club^[9] The Wellness Community was founded in 1982 by Harold and Harriet Benjamin in California.^[10] They wanted to create something that had previously been missing in cancer care—an organization that would provide social and emotional support to cancer patients, their families, friends and caregivers.^[11] Gilda’s Club was founded in 1991 in honor of Saturday Night Live comedian and former ovarian cancer patient, Gilda Radner, after her passing, by her husband, Gene Wilder, and Joanna Bull with other friends and family.^[12] Gilda’s Club opened locations to provide social and emotional support for people living with cancer nationwide while the Wellness Community locations remained on the West Coast.

In 2007 the Institute of Medicine released a pivotal report^[13] on the importance of addressing the social and emotional needs of individuals living with cancer, which was a practice both the Wellness Community and Gilda’s Club had been implementing for years. Not long after, to be able to better serve more individuals living with cancer, the Wellness Community and Gilda’s Club merged to become the Cancer Support Community.^[14]

Available resources

Helpline

The Cancer Support Community provides a toll-free Cancer Support Helpline for anyone affected by cancer. The Helpline is open Monday through Friday from 9 a.m. to 9 p.m. and can be reached at 1-888-793-9355.^[15]

Affiliate Network

The Cancer Support Affiliate Network consists of 44 licensed affiliates, 170 locations and a growing number of health care partnerships.^[16] Affiliates provide programs free of charge to anyone affected by cancer, including patients, survivors, caregivers, loved ones and children.^[17] These programs include support groups, educational sessions and health and wellness programs.

Frankly Speaking About Cancer – Education Series

Frankly Speaking About Cancer is CSC’s landmark education series providing trusted information for individuals affected by cancer. This series includes:

• Print and digital publications^[18][19][20]
• A weekly radio show^[21]
• Online materials^[22]
• In-person and online workshops^[23]
• Webinars^[24][25]

Online Support

The Living Room is CSC’s online support group in the form of message boards.^[26] Anyone impacted by cancer can join and post to the message boards that are relevant to them to find support, education and hope.^[27]

Research

The Cancer Support Community established the Research and Training Institute (RTI) to accomplish their mission of doing psychosocial, behavioral and survivorship research for people living with cancer.^[28] This research is done with the goal of providing improved resources to individuals touched by cancer.

The Cancer Support Community uses evidence-based interventions to improve the patient experience by adding to the body of psychosocial research, developing tools and education resources.^{[29][30][31][32][33]}

Among their key research programs and services are:

• The Cancer Experience Registry accomplishes the objective of elevating the patient voice. It is a unique online community that brings people impacted by cancer together to make their voices heard, connect with each other, share experiences, learn from and help others. It is free and confidential. RTI uses the information from the surveys filled out by participants to improve the care for people with cancer and their caregivers, and to develop better services and programs for the community.^[34][35]
• Open to Options aims to improve patient-doctor communications. Patients who report good communications with their providers have better quality of life, lower distress and are more satisfied with their treatment. The RTI explores the nature and quality of patient-doctor interactions at every stage of the cancer experience with an emphasis on the shared decision making process.^[36]
• CancerSupportSource is a distress screening, referral and follow-up program developed and implemented by CSC.^[37] Created to identify the specific concerns experienced by a patient and provide a tailored and desired response.^[38]

Policy and Advocacy

The Cancer Policy Institute at the Cancer Support Community works with advisors and friends to advocate the mandate that comprehensive, quality cancer care includes medical care, as well as social and emotional care. The Cancer Policy Institute has initiatives,^[39] training opportunities, learning materials,^[40] and events. CSC’s Grassroots Advocacy Network is open to anyone to join. This network is a place to stay up-to-date, learn more about key issues that are important to patients with cancer and their loved ones, and make one’s voice heard at a local and national level. CSC positions include:^[41]

• Access to care for all patients
• Quality as a central theme
• Research as a critical priority

Use of Funds

In 2015, the Cancer Support Community reported $8,731,796 net assets at the end of the year. In the same year, CSC reported $5,981,094 on expenses. Of those expenses, 82% went to programs and services, 9% went to management and general, and the other 9% went to general fundraising.^[16]

Evaluations and Ratings

The Cancer Support Community has received numerous high-level charity ratings including the following:

• The GuideStar Exchange Gold Participant distinction^[42]
• Charity Navigator 4-star rating^[43]
• The Independent Charities Seal of Excellence^[44]
• Named a Top Nonprofit Organization by Philanthropedia^[45]

External links

Cancer Support Community: http://www.cancersupportcommunity.org

Cancer Experience Registry: http://www.cancerexperienceregistry.org

References