New & Future Member Orientation

From Bill McCue, Administrator
PRP Facebook Support Group

Tierney Ratti (1961-2020) was a PRP veteran who became the Gold Standard of caring and sharing. Her journey began in 1972 at the age of 11 with the onset of pityriasis rubra pilaris. She was one of the original “Pretty Red People” who traded emails on AOL — You’ve Got Mail. Inspired by Jean-Luc Deslauriers, a Canadian, the original PRP Support Group was formed. Membership has ebbed and flowed over the past two decades. Using list-serve technology, members traded an average of 150 emails each month.

In 2008 another Canadian and PRP sufferer, Jonah Grant-Scarfe,  recognized the value of Facebook as an alternative to trading emails. While the PRP Facebook Support Group didn’t immediately catch on, there were 120 members by November 2013. That’s when Tierney took over as Administrator.  When the number of posts (threads) hovered around 60, there were thousands of comments. Seasoned “Facebookers” were beginning to understand and appreciate of Facebook technology. Today, membership continues to ebb and flow — but there is more flowing than ebbing. Each month 30 new members join. In September 2020, membership surpassed 2,200


As a new member, there are
some common sense
guidelines to consider.

Posts & Comments

The PRP Facebook Support Group is built on a solid foundation of questions (posts) and answers (comments). Any topic is fair game if it is related to the PRP experience. During 2019,  a monthly average of 155 posts generated 2,387 comments.

Sharing

We have a motto: “People who care, share; People who share, teach.” New members quickly learn that what works for some does not for all. We share both the milestones of healing and the disappointment of a flare. We offer shoulders to cry on and partners for your Dance of Joy when someone announces a healing milestone.

Religion & Hugs from Afar

For those who want to invoke a Higher Power, the PRP Facebook Support Group is a venue of tolerance. Some of us pray, some hug, some just think good thoughts. Within the PRP community, goodwill comes in a variety of flavors.

Social-Political Issues

Other than the legalization of marijuana for medical purposes, and issues related to the Federal Drug Administration, step therapy, access to affordable treatment options and funding for the National Institutes of Health — the PRP Facebook Support Group focuses on PRP.

Videos & Inspirational Posters

The PRP Facebook Support Group is a “Closed Group” where members expect a sharp focus on all things PRP.  Please post “uplifting” videos as the comment to a post rather than as the post. The goal is to minimize visual clutter.

Unauthorized Selling 

The PRP Facebook Support Group is not a captive audience for marketers of sunglass and other products and services. Our members will blow the whistle on any charlatan seeking financial gain at our expense. Revocation of membership is swift. Everyone is on high alert. Always at the ready, the DELETE button made famous by the late Tierney Ratti will be used judiciously to protect members.