It is especially fitting that the global PRP community celebrate the life of Tierney Ratti and a her nearly half-century PRP journey.

While the symptoms of PRP first appeared in 1972 at the age of 11, it wasn’t until  November 1994 before she reached out to the National Organization of Rare Disorders in search of other PRP patients. Tierney sent a letter to “Mr. Pack and Mr. Reid” and shared her story. This was the beginning of a PRP patient advocate.

For the next several years Tierney connected with other PRP patients and used AOL to share their journeys. For those who participated, the AOL tagline, You’ve Got Mail” could have been amended to: “You’ve Got Mail and We’ve Got PRP”.

In November 1997 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.  It didn’t take long for “PRP Facebookers” were beginning to understand and appreciate Facebook technology.

Now fast forward to September 2020 and see the fruit of Tierney’s labor for the past seven years — part of her legacy. Today, membership has surpassed 2,040. Each month an average of 30 new members join the Land of Chat. During the period January 1 to August 31, 2020. This is part of her legacy.

✻  New members: ✻  Posts: 1,004 (125 per month) ✻  Comments: 16,791 (2,099 per month) ✻  Reactions, e.g., like. care. love, etc: 25,505 (3,188 per month)

Tierney may be gone and her PRP journey is over, but now is the time for the global PRP community to celebrate her caring, sharing and teaching.