Before we look ahead — let’s look back.
by Bill McCue, PRP Patient Advocate (July 19, 2022)
In May, 2013 I was nine months into my PRP journey with another 11 months to go. What was your PRP status eight years ago?
- Back in July 2013 there was no PRP patient database. Today we have a PRP Global Database with over 1,400 PRP patient profiles. Moreover, every patient profile has a valid email addresses.
- Back in July 2013 there was no PRP Survival Guide. Now we have nearly 600 webpages written in lay language for PRP patients and caregivers.
- Back in July 2013 the PRP (Facebook) Support Group had less than 100 members and was still three months away from becoming an official Private Group. Today our “Land of Hope” serves over 1,700 PRP Facebookers representing 1,300-plus PRP patients.
- Back in July 2013 there was no patient-driven advocacy for the PRP global community. By year’s end, however, the PRP Alliance had been formed. Within two more years we helped create the International Alliance of Dermatology Patient Organizations (also known as GlobalSkin). As a co-founder of IADPO I had the opportunity to serve on their first Board of Directors and as Treasurer until 2019.
- Back in July 2013, the National Organization of Rare Disorders (NORD) maintained a 1,000-word overview of pityriasis rubra pilaris. Last revised in 2007, the PRP NORD Report was significantly expanded by the PRP Alliance in 2017. The 5,000-word, patient-friendly overview became a cornerstone in building PRP awareness among patients, caregivers and even dermatologists.
- Back in July 2013, PRP research was limited to genetic research at Thomas Jefferson University. Today the PRP Global Community is aggressively supporting “Quality of Life” research efforts at Oregon Health and Science University and GlobalSkin’s multi-year GRIDD project. We have also pursued our own patient-initiated surveys, e.g., Onset to Diagnosis.
The PRP global community has been moving forward — project by project. But now what? What lies ahead. Where can we be in December 2025.
The Road Ahead
There are times when I need your support beyond kudos and kind words. There are times when planned projects need your support. Whether or not the projects come to fruition now and December 2025 will be largely dependent upon the PRP global community.
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Website Stuff —
There are costs associated supporting two websites, e.g., hosting, security, domain renewal, battling the unpredictable gremlins for both prpAlliance.org and prpSurvivalGuide.org
While we achieved the goal of reliable hosting and increased security, there is still a need to improve search functionality (user can find what they seek) as well as Search Engine Optimization (patients, caregivers and dermatologist can find us).
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PRP Awareness Month Stuff —
There are costs associated the annual observance in November of PRP Awareness Month. We should not squander an opportunity for the PRP global community to rise above the noise level of psoriasis, atopic dermatitis, 7,000 other rare diseases and 590 other rare skin diseases. Typically, we do the best we can with what we have. What if we could really make some noise?
Outreach Stuff —
There are costs associated with conducting outreach to the dermatology departments at major teaching hospitals in the U.S. and abroad. We have to find ways to more effectively educate dermatologists on the ways PRP impacts the Quality of Life of PRP patients.
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Education Stuff —
There are costs associated with creating online tools, e.g., videos that effectively support patients and caregivers as we journey from onset and diagnosis, to treatment options, daily living and some form of remission or long-term management.
The bottom line: there is still much to accomplish between now and December 2025.
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If you’ve been wondering how to help, please consider a symbolic contribution of $20.25. I’ve never had a problem asking for money for a worthy cause … and I certainly funding the PRP global community through December 2025 to be a worthy cause.
My approach to fundraising assumes that everyone has the right to say “No”. However, my responsibility to the PRP global community is to give everyone the opportunity to say “Yes”.
There are two options:
(1) CLICK HERE to donate to the PRP Alliance via PayPal.
PayPal accepts most major credit and debit cards. You do not need a PayPal account to use PayPal.
(2) To donate via personal check, cashier’s check or money order:
Make personal check, money order or cashier’s check made payable to the PRP Alliance and send to the following address:
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Bill McCue, President
PRP Alliance, Inc.
1500 Commerce Drive
Plano, TX 75093-2640
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If you have any questions, please email me.
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