“When you have PC, you get really good at counting steps.
For me, I am constantly calculating how much walking will be involved in each choice I make, and whether or not I should “spend” my steps. When I budget well, I almost don’t even think about the pain. When I overspend, the pain is debilitating, and it can take me days to recover.
Because steps are such a big focus for PCers, it got us thinking about the many steps PC Project has taken in our mission to ease the suffering of people with PC.
For example, one of our first big steps was establishing the International PC Consortium (IPCC) and the International PC Research Registry (IPCRR).
Before this milestone, PC patients often felt isolated by their pain and unanswered questions. Most doctors either misunderstood PC as a cosmetic issue or provided ineffective advice. The scientific and medical communities considered PC a niche “nail disorder” with little if any understanding of the pain it causes.
But through the PC Consortium, global experts in science and medicine came together to define the PC syndrome and uncover the true nature of this painful disease, guided by robust registry data. This collaboration sparked a wave of scientific breakthroughs, providing patients not only with access to informed doctors but also with a supportive community and free genetic testing to confirm their diagnosis.
Imagine being a parent or young adult seeing specialist after specialist — sometimes dismissively being told there’s no need for concern, other times leaving with false hope — now for the first time finding clear answers and a connection with others who truly understand your experience.
This was a huge step forward for PC patients and their families. And it only happened because caring people like you stepped up to support PC Project.
That’s why this year’s GivingTuesday theme is “Step Up for PC.”
Your support on GivingTuesday will not only help PC Project step up our resources for the programs that PC patients and parents rely on every day, but you’ll help step up our investment into research that will lead to more effective PC treatments and a cure in our lifetime.
Please open your calendar to December 3 and set a reminder to participate. Then watch for our emails on GivingTuesday explaining how you can help get the word out.
Together we can make 2025 the next big step forward for PC research and patient care!
– Jack Padovano, PC Project Board Chair
