DATE:  Tuesday, July 15, 2014

TO:  All PRPers and Surrogates—Status: Active and Remission

FROM:  Bill McCue—PRP: Type 1; Onset: 08/08/2012 at age 66; Remission: 04/08/2014

SUBJECT: A New Vision for a Worldwide PRP Community

 

A new vision for a Worldwide PRP Community

The PRP Support Group I joined on November 28, 2012 was not dissimilar from the PRPSG of 2002. In fact, many of the PRPers who offered advice and encouragement to fellow PRPers then, are still doing so now. God love them for their relentless caring and sharing.

However, as much as I had been helped by fellow PRPSG subscribers, I have long felt that we could be more than offer an email-based Q&A forum. Over nine months ago (October 8, 2013) I put to paper a few ideas that had been bouncing around my head. I had a vision of a PRP Community where PRPers and PRP-savvy dermatologists really worked together to improve both the timeliness of diagnoses and the success of treatment options. (See pages 1 through 7)

The PRP Survival Guide

The PRP Survival Guide began as my personal survival guide. It was my therapy and significantly cheaper than paying a shrink a $100 copay.

The Survival Guide will be a different kind of book. It will be “built” more than “written”. It will collect, codify and report the experiences of PRPers going back to 1997 and the founding of the PRP Support Group. Add to that the endless banter of PRP “Facebookers” from the Land of Chat and there will be plenty of anecdotal information and statistics to whet the appetites of future PRP researchers. (See pages 8 through 15)

Link to July 15th Issue
While you may access of the PRP Community newsletters via the Newsletter Archives “button” below, here is a short cut to the July 15th Issue. Click the following boldface blue link.

 

PRP COMMUNITY NEWSLETTER—JULY 15TH ISSUE

 

PRP Alliance continues to move forward on many fronts. Click a boldface red link below and you will be delivered to the appropriate poll or survey you seek.

  • Registry of PRP-Savvy Dermatologists
    A total of 403 PRPers have identified 621 dermatologists as PRP savvy. The goal is 1,000 PRP-savvy dermatologists in time for the American Academy of Dermatology 73rd Annual Meeting in March 2015.
  • PRP Awareness Day Survey
    Scheduled for November 6, 2014, PRP Awareness Day will be the official beginning of a multi-year effort to enlighten dermatologists and promote PRP research.
Check out eight issues of the newsletter.
For nearly 16 1/2 years the PRP Community has been in a communication vacuum. On April 1, 2014 a new channel of communication was introduced…a newsletter. Nine issues and 130 pages in four months. We are definitely making up for lost ground.

 

Submit your PRP Census for today
Over 400 PRPers submitted a census form during the period November 6, 2013 and February 28, 2014 (World Rare Disease Day).  Our goal is to have 1,000 completed census forms by November 6, 2014 (PRP Awareness Day). Please stand up and be counted.

 

Enrollment has ended
Enrollment in the Thomas Jefferson University PRP Research Project has ended. We hope to see the results of their research published well before PRP Awareness Day (November 6, 2014). The PRP Community continues to applaud the efforts of Dr. Jouni Uitto and his research team.