A cancer diagnosis can overwhelm entire families in addition to the physical and emotional toll it takes on patients. Many questions are raised that often go unanswered, at least initially. The sheer volume of communication needed to provide updates to family members and friends can also be overwhelming. MyLifeLine.org, a Denver-based non-profit focused on social and emotional support services for cancer patients, was created to help solve this problem.
MyLifeLine.org exists to reduce the stress and anxiety associated with a cancer diagnosis. We connect cancer patients and caregivers to their community of family and friends for social and emotional support. We provide free personalized web sites, communication services, cancer resources and tools that allow patients and caregivers to share their journey and focus on healing.
MyLifeLine.org was founded in 2007 by Marcia Donziger, who was diagnosed with ovarian cancer in 1997, when she was 27 years old. She felt overwhelmed by the volume of communication, during a time when she was struggling to fight the cancer inside her. Marcia couldn’t physically return all the phone calls herself, and found it emotionally draining to repeat the same information about her condition, over and over.
In 2003, Marcia became aware of a special young woman, Lori Arquilla Andersen, who had just been diagnosed with cancer. Marcia was profoundly inspired – not just by Lori’s strength through crisis, but also by the way she harnessed the tools available to stay in touch with her family and friends during her illness. Through her own personal website, Lori posted her progress and courageously inspired all who followed her struggle. As time went on, Lori’s support network expanded beyond her imagination. People visited Lori’s site to write encouraging messages, offer help to her family, or just stay updated and keep her in their prayers.
Inspired by Lori and her family, Marcia saw the tremendous benefit for cancer patients to communicate via a personal website. Sharing updates and managing caring messages via one central website can help everyone touched by cancer to deal with it. Marcia saw an opportunity to make a difference and extended the benefit of free, personal websites to all cancer patients. Thus MyLifeLine.org was born as a non-profit organization.
BUILD YOUR SUPPORT COMMUNITY
I became involved with MyLifeLine.org due to my own experiences and the promising role technology plays to help patients and caregivers. I live in Denver with my wife and two young children while the rest of my extended family resides on the East Coast. When a family member experiences a health issue it can be difficult to travel to see them and provide support in person. Today’s technology, however, ensures that every patient can stay connected to their entire support community, and each member of the support community has the ability to stay involved and provide strength and inspiration to the patient. Research has shown that a thriving support community is beneficial to patients’ healing process.
- A recent study of 735,0000 cancer patients included in the Surveillance, Epidemiology and End Results program found that improving social support for our patients may be equally as important as providing effective therapy, and it is less costly to develop and implement.1
- The provision of practical support increases the likelihood of adherence to evidence-based medicine 3.6 times.” 2
Patients aren’t the only ones who can benefit from a strong support community. Caregivers, the people taking care of the patients and coordinating communication and care, need to be supported just as much as the patient. It can be equally overwhelming to be the primary person supporting the patient and managing care, appointments, medications, meals and transportation on top of lives that are already busy.
WHAT PATIENTS & THE ONCOLOGY COMMUNITY ARE SAYING
A goal of MyLifeLine.org is to become the preferred communication platform for the cancer community. We recently partnered with the American Cancer Society to provide web sites and social support services to their constituents, and the American Cancer Society will direct patients and caregivers to MyLifeLine.org’s services.
Since our launch in 2007, we have helped more than 144,000 people affected by cancer globally and are on track to add 1,500+ new patients and 18,500+ new family members and friends to our list of registered guests in 2015.
I encourage anyone facing cancer, or anyone who knows someone with cancer, to consider setting up a free site with MyLifeLine.org. We’ve heard from a countless number of people how it positively changed their experience with cancer. A family living across the country was able to know when their loved one had a chemo appointment. A small town rallied around a hardworking individual to raise thousands of dollars for their medical costs. A single woman was able to schedule meals delivered to her from her eager to help group of friends. We heard from one patient who loved MyLifeLine.org because he was able to have a sense of normalcy with his friends; since they were up to date on his condition, they could spend time together without asking about his cancer.
MyLifeLine.org goes beyond the personal websites to connect patients and caregivers to their support community, and allow them to gain control, be empowered and become their own advocate. The service is offered for free to all people impacted by cancer.
1. Aizer AA, Chen M-H, McCarthy EP, et al: Marital status and survival in patients with cancer. Journal of Clinical Oncology 31:3869-3876, 2013
2. DiMatteo MR: Social support and patient adherence to medical treatment: A meta-analysis. Health Psychology 23:207-218, 2004