Pachyonychia Congenita (PC) is an ultra-rare genetic autosomal dominant skin disorder. PC is caused by a mutation in one of five keratin genes.
Every donation over $25/£20 received by the end of February will receive a complimentary copy of my new solo piano cd Rinascita and the donation will be matched by an anonymous donor.
Below the letter I sent to my fellow PCers around the world if you want to know more:
Dear Fellow PCers:
I have PC. But thanks to the PC Project, I also have hope – hope for a cure in my lifetime.
As a professional musician living with PC, composing music is not a problem. However, playing piano is a constant challenge. If I overdo it, my fingertips start hurting. I don’t stop playing, but I do pull back.
On the worst days, PC prevents me from being able to perform at my very best. As a result, I have to carefully plan my studio sessions, alternate demanding pieces with simpler ones, allow for frequent breaks, and vary my technique.
The same goes for public relations and “meet and greets,” which are crucial in my line of work.
Promoting myself means a lot of walking and standing. When I have an appearance, I start getting ready at least two or three days in advance – stressing my feet only when necessary, inspecting venues online and asking for information in advance, and thinking of clever strategies to stay seated most of the time.
Few people in the audience know what it’s like to live with the incredible challenge of PC. You do. That’s why I’m asking you to make your most generous new-year contribution to the PC Project.
Fellow PCers – you know the daily struggles of living with PC. At the same time, I think you feel as I do … that our unwavering support for the PC Project is the best hope for a cure.
There was a time I almost gave up playing music. Thankfully, I realized that music is my love. And since other people enjoy what I do, it’s worth the pain and struggle!
The PC Project is a huge part of why I have hope. Today, I attend patient support meetings, serve as a PC advocate, and help raise funds so we can continue to move toward a cure.
Together, we are making life better for one another – and making real progress in the fight against PC.
P.S. As part of my commitment to the PC Project, I’m honored to help make possible a special offer …
February is the month of love and PC Project is all about love. So every donation over $25/£20 received by the end of February will receive a complimentary copy of my new solo piano cd Rinascita and the donation will be matched by an anonymous donor.
Thank you in advance for your generosity! – PC