7-PRP Advocacy

Caring, Sharing and COUNTING. Tierney was more than just caring and sharing. She wanted PRP patients to “Stand up and be countedâ€. This section of Tierney’s Memorial asks PRP patients/caregivers to update their patient profiles and identify PRP-savvy dermatologists. Just another way to say “Thank You†to Tierney. LINK TO 2020 PRP GLOBAL CENSUS

Tierney’s Story (circa 1994) Tierney Ratti did not formally chronicle her PRP journey beyond the following letter. 30 November 1994 Dear Lady and Gentlemen: After being diagnosed with pityriasis rubra pilaris in October, I contacted the National Organization for Rare Disorders, Inc., and was given your names as others with this disease. I have spoken

While her PRP journey has ended, Tierney Ratti’s family has created a Memorial Fund to help pay for her “end-of-life transition and fulfill her final wishesâ€. Charlie has asked me to post the following here — to the PRP Facebook community she loved. From the Ratti Family Tierney Sue Lynch Ratti, my devoted wife and

  Editor’s Note: “She is gone. Her journey is over.” That was the message shared with the 2,103 members of the PRP Facebook Support Group. While the immediate reaction was sadness, it didn’t take long for the Land of Chat to honor Tierney’s memory. The Land of Chat was aware of Tierney’s hospitalization. Her daughter, Samantha, posted the news

  Editor’s Note: Murray Rose, PRP patient snf unregistered curmudgeon. Onset of PRP symptoms in August at the age of 66.  Currently lives in Surrey British Columbia with his wife, Carel and a chainsaw. Murray has been one of the “Three Amigo Administrators” serving the 2,000-plus members of the PRP Facebook Support Group, a.k.a. the Land of Chat. Having lost

Tierney Lynch Ratti, 61, of Virginia Beach, Va., formerly of Vinton, Iowa, died Sept. 12, 2020, at the Sentara Hospice House, in Virginia Beach. She had suffered for several years from complications of pityriasis rubra pilaris, commonly referred to as PRP. Her body has been donated for medical research, with interment at a later date. Tierney was

Editor’s Note: While pityriasis rubra pilaris is considered gender neutral, (see NORD PRP Report), there are those who believe it may be a “wee bit†more prevalent in children diagnosed with Juvenile Onset. Of course Ginny Maxwell (and her PRP kiddos represent a 50-50 gender allocation. The premise of a Ted Talk video (circa 2013) recently unearthed by

Do you know how to make a disability claim in Canada? Murray Rose has provided a link to an  article he feels  is very good at explaining a step by step procedure to follow. The article  represents the first HARVESTING of information We will build from this. DISCLAIMER: Neither the PRP Alliance, PRP Survival Guide nor PRP Canada