PBCers Going Strong for 20 Awesome Years!

If you don’t believe in the power of people who live with chronic diseases like PBC, you need to meet my friend and inspiring colleague, Linie Moore!

linieandryan PBC
Linie Moore (left) and her son Ryan–together they’ve made a difference in the lives of people challenged by PBC. [Source: PBCers.org]
In 1995, doctors diagnosed Linie with a chronic liver disease. At the time, it was called primary biliary cirrhosis (PBC). But the word “cirrhosis” is strongly connected in people’s minds to alcohol abuse–and PBC is NOT caused by alcoholism. Also, with earlier diagnosis and treatment,  the majority of cases today will never reach cirrhosis. In 2014-2015, the organization Linie founded was instrumental in getting the disease more correctly renamed to “primary biliary cholangitis.”

December 1, 2016 marks the 20th Anniversary of the PBCers Organization

When she first received her diagnosis, Linie, like many primary biliary cholangitis patients of the time, was told  that she would need a transplant within a few years.  After the initial shock and tears she went to the Internet to learn more (cue AOL dial-up sounds here).

90s vintage retro internet 1990s PBC
It wasn’t easy connecting with others back in the day! [Source: giphy.com]
The information Linie found about PBC was depressing and outdated and gave her little hope! Back then, there were no groups, message boards, or chat rooms for liver disease, either. But she didn’t want to fight against the loneliness, isolation and worry caused by her diagnosis alone. So, she posted on the Transplant Newsgroup looking for others diagnosed with her disease, so she could talk with them.

Through that posting Linie met Diana, Joan, and Grant, who became her support trio. Then, Linie and her son Ryan created the first primary biliary cholangitis website, AOL Chat room, Message Board and Group Surveys.  What started as her desire to connect with others for support and answers has evolved into an internationally recognized entity in liver disease support, education, and fundraising: PBCers. I am proud to say I am a member of the organization’s Executive Committee (as well as a person living with PBC).

PBC plus Education – Research – Support = PBCers.

Over the past 20 years our group has:

  • Moved from a small email group to the world’s largest online PBC support group, with over 3,100 members worldwide receiving daily digests, several Facebook support pages, and a Twitter account.
  • Organized 13 conferences dedicated to providing members with updated information from PBC researchers, clinicians, and pharmaceutical companies.
  • Participated in numerous research projects with the University of California Davis under the direction of Dr. Eric Gershwin, and projects with Dr. Keith Lindor and Dr. Cynthia Levy from the Mayo Clinic.
  • Joined in a partnership with the American Liver Foundation (ALF) to support each other’s missions of helping PBC patients.
  • Worked with pharmaceutical companies by participating in jointly-created surveys and  numerous clinical trials. In 2016 PBCer’s collaboration with Intercept Pharmaceuticals culminated in FDA approval for the 1st new treatment for PBC in 40 years!
  • Joined forces worldwide, in 2014-2015, with other PBC organizations, doctors, and researchers to change the name of PBC to primary biliary cholangitis.
  • Donated almost $1 million to research projects for PBC, either directly or through ALF’s PBC Fund the Cure.

Onward and Upward to the Future!

We are proud of our organization. We have achieved amazing things over the past 20 years, more than we ever dreamed possible. What began with Linie’s PBC diagnosis, her fears, and the need to meet others with PBC, has turned into an organization which gives us all hope for our futures and learning the cause and cure for primary biliary cholangitis.

As we look forward beyond this year, our goals have not changed. We will continue providing PBC education, help and support to patients, their family members and caregivers. Also, to advocate for PBC patients and raise funds for research. Our mission is to help all PBC patients learn to cope with this disease, and that no one feels alone with PBC.

I hope you’ll join us!

carolAbout the Author: Carol Roberts has PBC, has been actively involved in the Facebook group and the patient organization.  She gave testimony to the FDA, which helped lead to the unanimous approval of a new drug, Ocaliva, by Intercept Pharmaceuticals for treating refractory PBC.

 


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