On October 12, 2005, my brother was diagnosed with cholangiocarcinoma. Thus began a journey I could not have foreseen. I was a stay-at-home mom with five young, busy children. I volunteered at school, church, and in our community.
Immediately after Mark shared his diagnosis with our family, I began searching Google, reading publications, and identifying scientists and clinicians. I made a lot of phone calls and sent a lot of emails. I was coming back empty-handed on every attempt to provide Mark with hope.
Family meetings with Mark and Marianne were held once a week on Sundays. We shared research findings and information from conversations, and we discussed options; there just weren’t many to consider. We talked about who, if anyone, was doing research on this rare cancer and how we could get connected, but nothing we found was translating into treatment options for patients – so we shifted our efforts to how we could connect with other families and patients and find out if anything was working in other countries and institutions.
My brother-in-law Rick suggested we start a discussion board. He put together a simple design, and we began, together as a family, posting information, updates, and ideas. There were just a few of us those first couple of weeks, but the group continued to grow. The youngest patient on the boards was a 21-year-old newlywed; at 38 years old, Mark was one of the oldest. Patients and caregivers from around the globe convened on the discussion boards to help each other. It was inspiring to see them posting, responding, and often lifting each other. The discussion boards filled a desperate need to communicate with other patients and caregivers and not feel completely alone and isolated.
The discussion board was a lifeline to our family and to so many others. Patients we had only talked with on the discussion board flew out to meet us and spend time with Mark. We became not just fellow travelers but friends.
Marion Schwartz and so many others came on board to help their loved ones and stayed to help others. Marion was the first formal advocate for CCF and helped us reach out and build important networks, but most importantly, she was a champion for the patients. She was a fierce advocate for the discussion boards and the deep knowledge and expertise that had been shared on its many forums.
For many of us, it was the only way we could communicate with others about cholangiocarcinoma in a safe environment, knowing that we were all in this together and doing the best we could to make sure information, publications, and important communications were shared directly with those who could benefit.
It has now been about 16 years since our family started the discussion boards. Over that time, our ways of communicating with our community have changed, and so did the number of patients and caregivers on the discussion boards. Social media was easier to navigate for many and provided opportunities for patients and caregivers to share their information more broadly and boldly.
One of CCF's core values is innovation, and sometimes that means we have to say farewell to a long-time companion, in this instance that is the discussion boards. I’m pleased that the information on the boards will remain searchable and accessible to those who want to mine it for data.
I’m so grateful for Rick, who provided a simple solution that enabled us to reach out and connect with the cholangiocarcinoma community across the world. We could not have made the important progress that has been made in this disease without this important beginning. To all those who moderated over the years, I want to say thank you, what an enormous gift you have been to this community. I also want to thank those who lifted, encouraged, and provided hope for others on the discussion boards, this is a place that provided real hope for patients, caregivers, and their families. I know that is what we got and what we hope to always provide to others.
Other ways to connect
- CCF's Social Media
- Online Monthly Support Meetings
- Educational Webinars
- Cholangio...what? Blog
- CholangioConnect Mentor Program