A black and white logo of the word allies.
AN IMPORTANT MESSAGE FOR PATIENTS DIAGNOSED WITH PITYRIASIS RUBRA PILARIS (PRP) WHO ARE SEEKING THE PRP SUPPORT GROUP. PLEASE USE THE FOLLOWING LINK. ANSWER THE TWO QUESTIONS AND YOUR REQUEST TO JOIN NEARLY 1,000 “KINDRED SPIRITS” WILL BE APPROVED IMMEDIATELY.  
https://www.facebook.com/groups/1055476976361999
 

I have an idea.

I believe that this idea could make a significant difference in the journeys of many PRP patients.
How many? I don’t know, but I want to find out.
My idea is based on TWO very successful models for patient support each with a track record for over 10 years.
  • National Psoriasis Foundation (NPF)
  • International Pemphigus & Pemphigoid Foundation (IPPF)
1.  NPF NAVIGATION CENTER
  • The National Psoriasis Foundation (NPF) launched their Patient Navigation Center in 2016 to provide personalized support and educational resources to over 8 million individuals affected by psoriasis and psoriatic arthritis in the U.S.
  • Over the past decade, professional Patient Navigators have provided support to over 85,000 psoriasis patients.
  • It would be my intention to replicate the scope of support for PRP patients and their care partners. LINK TO NPF
2.  IPPF PEER COACH PROGRAM 
  • The International Pemphigus & Pemphigoid Foundation’s most important objective is to provide patients with information about pemphigus and pemphigoid
  • The Peer Coach Program offers the opportunity to communicate with specific members of the IPPF community.
  • Peer Coaches are volunteers who have learned how to manage their own diseases. They willingly share their insights and experiences as well as access to IPPF resources and educational materials.
  • It would be my intention to replicate the scope of support for PRP patients and their care partners. LINK TO PPPF

The immediate challenge I face is to prove the following to myself and others like you:
  1. There is a need for a PRP Patient Navigator AND a yet-to-be determined number of PRP Peer Coaches.
  2. I can replicate or even improve upon what Patient Navigators do for psoriasis patients and Peer Coaches do for pemphigus and pemphigoid patients.

MY PATH FORWARD WILL BE
NOVEMBER 2025

 

Historically, November has been a good month to be a McCue,
  • November 1968
    Commissioned an officer in the US Marine Corps. Semper fi.
  • November 1976
    Became a father. Didn’t stop there. Today we have five adult children, seven grandchildren and one great grandchild.
  • November 2012
    After being misdiagnosed with sebborheic dermatitis for three months (and given way too much prednisone) I was mercifully diagnosed with PRP.

November 2013 didn’t happen overnight

January 2013
  • My mobility was seriously impaired. My feet were swollen and encased in thick skin. Fissures on both feet bled. I wore dark blue backless slippers made white by shedding skin. For three months my world was limited to the bedroom, bathroom , den and kitchen. I shouldn’t count the den because I never stopped to shed. 
  • Thanks to University of Texas Southwestern (Dallas) a treatment plan that featured acitretin and the daily application of Clobetasol® and urea lotion. By mid-January my feet returned to their pre-onset glory (save two, missing big toe toenails).
  • I celebrated my Healing Milestone by driving over 750 miles from Plano, Texas to Panama City, Florida to surprise my son. Matt, an Officer of Marines, had graduated from US Marine Corps Recon School in August, days before the onset of my PRP. He was undergoing underwater combatant training with the Navy.
  • After a good night’s sleep, Matt and I walked 5-1/2 miles on the warm sand of Panama City’s infamous beach. It  was the moment I knew I would vanquish PRP. It also set the stage for the next nine months. 
February 2013
  • A purple background with the words " cure disease day ".In early I received an invitation from the National Organization of Rare Disorders to participate in the annual Rare Disease Day held on the ast day of February. I was inspired by their call to action.
  • Their timing could not have been better. I was still “stewing” about the lack of response to three posts I had made to the email-based PRP support group had joined in late November. Does anyone here live in Texas? Does anyone have Type 2 Diabetes?  How long from onset did it take for you be diagnosed with PRP?
  • With an estimated membership over a 1,000 subscribers to their listserve, the lack of response gave me pause.
  • On Febraru 6, 2013 I registered the domain name prpAlliance.com.
March to July 2013
  • Read 29,000 emails in the email-based PRP support Group archive and created a database of over 1,500 PRP patient profiles that included email addresses, onset dates, onset ages and comments regarding biopsies.
August 2013
  • Used the PRP patient database to publish a PRP Biopsy Report
September to October 2013
  • Learned enough about WordPress to build a website
November 1 2013 (6:00 AM)
  • 6:00 AM
    A busy morning. (1) Launched prpAlliance.com, (b) Invited over 1,500 PRP patient/care partners to participated in the first “Worldwide PRP Census”  to confirm core data: location, onset date and age, diagnosis date and current status (active or remission)
  • 10:00 AM
    Over 500 email addresses were no longer valid and blunced back as “undeiverable”. I  retained the core data I had collected but removed the email address.
Fast forward to October 2025, The current PRP Global Database now has over 5,800 PRP patient profiles.
  • Valid email addresses: 2,627
  • NEW PRP Support Group total: 999
  • Survivors from the OLD group: 565 
  • Not members from the OLD group: 434
But there was good news.  Over 1,000 didn’t bounce back. eventually, 750 participated in the first PRP Worldwide Census. November 1m 2013 was tbe first and only PRP Awareness Day.
 Fissures

I have an idea.

I believe that this idea could make a difference in the journeys of many PRP patients.
How many? I don’t know, but I’m willing            to find out.
My idea is based on TWO successful models for patient support each with a successful track record of over 10 years.
  • National Psoriasis Foundation (NPF)
  • International Pemphigus & Pemphigoid Foundation (IPPF)
1.  NPF NAVIGATION CENTER
  • The National Psoriasis Foundation (NPF) launched their Patient Navigation Center in 2016 to provide personalized support and educational resources to over 8 million individuals affected by psoriasis and psoriatic arthritis in the U.S.
  • Over the past decade, professional Patient Navigators have provided support to over 85,000 psoriasis patients.
  • It would be my intention to replicate the scope of support for PRP patients and their care partners. LINK TO NPF
2.  IPPF PEER COACH PROGRAM 
  • The International Pemphigus & Pemphigoid Foundation’s most important objective is to provide patients  with information about pemphigus and pemphigoid
  • The Peer Coach Program offers the opportunity to communicate with specific members of the IPPF community who have pemphigus and pemphigoid.
  • Peer Coaches are volunteers who have learned how to manage their own diseases. They willingly share their insights and experiences as well as access to IPPF resources and educational materials.
  • It would be my intention to replicate the scope of support for PRP patients and their care partners. LINK TO PPPF

The immediate challenge I face is to prove to myself and others like you that
  1. There is a need for a PRP Patient Navigator AND a yet-to-be determined number of PRP Peer Coaches.
  2. I can replicate or even improve upon what Patient Navigators do for psoriasis patients and Peer Coaches do for pemphigus and pemphigoid patients.

MY PATH FORWARD
IS NOVEMBER

 

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