By Linda Lynch (PBCerLinda@)
October, 1995 Linie Moore was diagnosed with Primary Biliary Cholangitis and was told as many others with PBC, that she would need a liver transplant within two years. After the initial shock and shedding many tears, Linie went on the Internet to learn more about PBC and find others diagnosed with this rare disease. There were no support groups or message boards other than the transplant newsgroup. The information she found was depressing and outdated, giving little hope.
Wanting to talk to other patients diagnosed with PBC, Linie posted her first message to the transplant newsgroup in December 1995. The first three responses were from Joan Dale (PBC) Diana Watson (PBC) and Grant Bingeman (PSC) and this began their e-mail circle. They understood Linie’s desire to meet others diagnosed with PBC and the need for learning more about this little known disease.
To find others diagnosed with PBC, Linie and her son Ryan created the first PBC PSC webpage and listed it in all the search engines as the PBC PSC Support Group. After numerous e-mails and a lot of pleading, American Online set up a bulletin board titled other autoimmune liver diseases. With the website, e-mail circle and the addition of an AOL bulletin board and chatroom, new members joined the group daily.
As the group grew, Linie became the human listserver for their circle of e-mails, and within a few months the PBC PSC group membership had grown to 150+. The group was a mixture of PBC, PSC, AIH and other liver diseases. As with any large and diverse group, the members started going in different directions, and the original goals weren’t being met.
In August about 10 members diagnosed with PBC joined Linie in another small e-mail circle calling themselves the PBC Ladies. Again Linie became the human listserver for the group. By October 1996, the group had 2 male members and the name PBC Ladies was no longer fitting. With the original goals in mind of PBC Education, Research & Support, the name PBCers fell into place while scribbling various letters on scratch paper. On December 01, 1996 the e-mail digest, website, chatroom & mailing address were officially changed to PBCers Support Group.
In 1998, the PBCers group joined fundraising efforts with the American Liver Foundation, “PBC Fund the Cure.” A new goal for the PBCers was to raise funds for PBC research. Executive and Fundraising committees of volunteers were formed to help Linie with the daily duties of our growing organization. The same year, the PBCers started participating in a new PBC research project under the aegis of Dr. Eric Gershwin at University of California Davis. Over the years, the research project has expanded and PBCers still participate in Dr. Gershwin’s project but also many others around the world.
January 1999, we held our first PBC Conference with almost 250 members attending. This was the first patient doctor PBC conference and the PBCers first education and fundraising event. Funds raised that weekend were donated to the PBC Fund the Cure. Also, at the conference Jean Haynes presented the first PBCers quilt, which was lovingly designed from quilt blocks sent by PBCers from around the World. Today, the PBCers Organization has three beautiful quilts displayed at various regional meetings and conferences.
In 2006, the “PBC Fund for the Cure” through the ALF reached its fundraising goals, and the PBCers Organization started funding their own PBC research. To date, the PBCers Organization has helped fund PBC research projects with well known hepatologists such as Keith Lindor, Cynthia Levy, Claudia Zein and our ongoing projects with Eric Gershwin.
Today, Linie still moderates the digest and treats the PBCers as her baby, like any other proud mom. But she now has the help of volunteers who make the PBCers Organization operate smoothly. Linie calls these volunteers her “Angel Team” and they are true angels working tirelessly behind the scenes of the PBCers Organization. Our volunteers work everyday making sure PBCers have access to our organization’s various areas of help and support: the PBCers Website, E-mail PBC Daily Digest, Social Media through Facebook and Twitter, Fundraising Opportunities, Extension Listbots, Regional Groups and PBC Conferences. They do this to make sure no one feels alone in their fight against PBC.
Be proud PBCers! We’ve climbed some pretty tall mountains over the years and the results are more than we ever dreamed possible. What started with one woman’s PBC diagnosis, her fears and the need to meet others with PBC, has turned into an organization which gives us all hope.
Hope for our futures and learning the cause and cure of Primary Biliary Cholangitis.