Before we look ahead — let’s look back.
by Bill McCue, PRP Patient Advocate (August 2021)
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 May 2013 there was no PRP patient database. Today we have a PRP Global Database with 2,626 PRP patient profiles.
- Back in May 2013 there was no PRP Survival Guide. Now we have hundreds of webpages written for PRP patients and caregivers.
- Back in May 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 2,436 PRP Facebookers representing 2,276 PRP patients.
- Back in May 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. As a co-founder of IADPO (circa 2015), I had the opportunity to serve on the Board of Directors and as Treasurer until 2019.
- Back in May 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 awareness among patients, caregivers and even dermatologists.
- Back in May 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 through the International Alliance of Dermatology Patient Organizations. We are also pursuing 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 over the last four months of 2021?
The Road Ahead
There are costs associated the annual observance of PRP Awareness Month (November 2021). 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?
Now it’s your turn.
Before I launch into my appeal I need to make it clear — If COVID-19 or the challenges visited upon you by PRP makes it difficult or impossible to donate, please don’t fret. We travel together as a family. Stay safe and heal.
However, if you’ve been wondering how to help, please consider a symbolic contribution of $20.21. I’ve never had a problem asking for money for a worthy cause … and I certainly consider the remaining months of 2021 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:
PRP Alliance, Inc.
1500 Commerce Drive
Plano, TX 75093-2640
If you have any questions, please email me.