DATE:  Wednesday, October 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 next step in a 17-year journey

 

PRP Awareness Day is an important day of transition for the PRP Community. It is time to move from the past to the future.

For nearly 17 years there have been PRPers and surrogates sharing their PRP-related experiences as subscribers to the PRP Support Group. I suspect thousands of Newbies and the families of Newbies have searched the Internet for information about pityriasis rubra pilaris and found their way to the PRPSG website: prp.support.org. I was one of them. It was November 28, 2012. The daily digests of messages I received as a subscriber were devoured each morning with a fresh cup of coffee. Like so many others I have benefited from the anecdotal information shared by my fellow PRPers.

A second support group appeared in April 2013. Founded by a long-term PRPSG subscriber, the PRP Facebook Support Group was based on new communication technology. It attracted PRPers who not only wanted to share their PRP-related experiences, but they also wanted to vent, rant, share images and build friendships. They were the “Facebookers” who have built the Land of Chat. I joined on November 21, 2013.

There are three other dates worthy of note.

  • The PRP Alliance was established on February 6, 2013. It began as a folder on my computer, a tax identification number, a $25 deposit in Chase Bank and a registered domain name: prpAlliance.com.
  • A worldwide census of PRPers was launched on November 6, 2013 that has resulted in the gathering of core data from over 425 PRPers and has already facilitated a dozen Meet & Greets this year.
  • I represented the PRP Community at the American Academy of Dermatology 72nd Annual Meeting held in Denver, Colorado from March 20-25, 2014. Important channels of communication were established in preparation for the 73rd Annual Meeting in San Francisco.

With PRP Awareness Day on the horizon, it’s time for the PRP Community to take a collective step in a dramatically new role…as PRP advocates. The caring and sharing we have in our support groups is no longer sufficient. We must become advocates of enlightenment. We must reach out to dermatologists on three levels: more timely diagnosis of PRP, more successful treatment options and ongoing PRP research.

On November 6, 2014 we celebrate PRP Awareness Day. Whatever we have accomplished in the past 17 years is history. Kudos to those who paved the way. However, the new focus for the PRP Community must be our future: diagnosis, treatment and research. Be part of it.

Link to the October Issue

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

 

PRP COMMUNITY NEWSLETTER—OCTOBER 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 249 PRPers have identified 303 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. Twelve 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 750 active PRPers by November 6, 2015 (2nd Annual PRP Awareness Day). Please stand up and be counted.