DATE:  Monday, September 1, 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: The Road to Success is Always under Construction


It has been nearly 17 years in the making.  Over the next 65 days we have opportunity to energize the PRP Community with a single, worldwide event. Exactly who are “we” and what is the “PRP Community”?

Who are “We”?
The fact that you are reading this newsletter means that you are among the we. Specifically, you either post messages, make comments, offer suggestions and/or read the offerings of your fellow PRPers. You are engaged.

A recent audit of the PRP Facebook Support Group for the period April 2013 through mid-August 2014, details that a total of 1,190 messages were posted by 121 individual PRPers and surrogates. This represents 44 percent of the 277 total membership. It should be noted—and underscored—that these posts were the catalyst for nearly 11,000 comments. Really!

What is the PRP Community?
As of September 1, 2014, the PRP Community database includes the current members of the PRP Facebook Support Group and an additional 658 PRPers and surrogates with valid email addresses. The PRP Worldwide Community is much larger and is comprised of five categories of PRPers.

  • PRPers/surrogates who are only members of the PRP Facebook Support Group
  • PRPers/surrogates who are only subscribers of the PRP Support Group
  • PRPers/surrogates who are affiliated with both support groups
  • PRPers who have fallen off the “PRP grid” and are most likely in remission. These are, for the most part, past subscribers to the PRP Support Group
  • PRPers who have never been on the “PRP grid” and need to be found

How do we energize the “We”?
That was a trick question. We don’t have to energize you…you are already on the PRP Grid. PRP Awareness Day is merely an opportunity for you to become a proactive advocate for the enlightenment of dermatologists. There is more that you can do besides post, comment and read about PRP. You can participate in PRP Awareness Day and energize others to become involved.

How do we energize your fellow PRPers?
We do not need to organize a mass gathering of PRPers in one location. There will be no march on Washington or a rally in London. We can, however, inspire individual participation by our fellow PRPers by scheduling a Meet & Greet for November 6, 2014—a traditional face-to-face gathering of two or more PRPers and surrogates. It can also be an iPhone-based, one-on-one Meet & Greet.

Path Forward
Sixty-five days is just enough time to organize a successful PRP Awareness Day. All we ask is that after reading this issue of the PRP Community newsletter you will invest 65 seconds to accept the challenge of a Meet & Greet. (See page 9)

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




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 Community Newsletter Archives
    For nearly 17 years the PRP Community has been in a communication vacuum. On April 1, 2014 a new channel of communication was introduced…a newsletter. Eleven issues under our belt and we are definitely making up for lost ground.
  • Over 400 PRPers submitted registration forms during the period November 6, 2013 and February 28, 2014 (World Rare Disease Day).  Our goal is to identify 1,000 active PRPers by November 6, 2015 (2nd Annual PRP Awareness Day). Please stand up and be counted.