PC Newsletter
Vol 19, No. 6
Dec 2024
As we head into the holiday season, we tend to think about what matters most in our lives. I would be remiss if I didn’t take a moment to send you my sincerest thanks and let you know that YOU are among the people who matter most to me.
While Giving Tuesday has come and gone, here at PC Project, we continue to receive donations both by mail and online. Frankly, fundraising is awkward and uncomfortable for me. And okay, I’ll admit it, I kind of hate it. I would much rather spend all my time working for and with the people in our community that I care so deeply about. But it takes funding to run an international charity and provide the incredible services we offer. So, every time another donation comes to PC Project, whether large or small, I am humbled and yes, even a bit emotional, knowing I am not alone in this journey and that you have caught the vision of what we’re all about. Thank you.
To all of you who have donated your time and service, I extend my heartfelt thanks as well. By sharing your expertise in science, medicine, and other areas needed for running an international patient advocacy organization for rare skin diseases, you make our team complete. Your contributions—especially your talents, skills, and your HEARTS—are a big reason why PC Project is so successful and why it has made a lasting impact on patients worldwide.
So, from the bottoms of my feet, and from the feet of everyone in our community who endures pain with every step, I thank you. However you celebrate the holidays, I wish you the warmest and happiest days ahead, with all my love and gratitude!
— Janice Schwartz, Executive Director ❤️
2024 At a Glance
If you haven’t yet seen it on social media, you can click on the graphic above or here to watch our PC Project 2024 Wrapped video and see some of our year end statistics. (You can only hear the music on IG and FB.)
A short, simple video will never fully convey the tremendous amount of work that happens year-round at PC Project or the major strides we’ve made together. But, we hope it gives you a glimpse of our growing registry numbers and the progress we continue to make for PC and other rare, painful skin diseases that have only us to fight for them.
$25 Becomes $75 Until the End of 2024
Our anonymous donor, who has generously pledged to match all Giving Tuesday donations, has extended the offer to match twice all monetary gifts through the end of 2024. Please tell your friends and family members about PC Project and let them know that every dollar they give adds up to make a big difference. Just think what we could do if everyone gave just $10!
For PCers and Families: 2025 Patient Support Meeting
Our next US-based Patient Support Meeting will be held May 4-6, 2025 in San Diego, California at the Hilton San Diego Airport/Harbor Island Hotel.
Prepare now to join us as we learn, teach, and inspire one another in our PC Project community.
Physicians and researchers are encouraged to come a few days early to the IPCC Symposium (and the SID), to attend this special meeting with our patients and their families. Industry representatives can attend with a donation to PC Project or with a sponsorship of our conference.
Details and registration here.
For Scientists and Physicians: 2025 IPCC Symposium
You are invited to attend the Annual International Pachyonychia Congenita Consortium (IPCC) Symposium on Wednesday, May 7, 2025, from 8:00 am – 2:00 pm PT at the Hilton San Diego Bay Front, in conjunction with the Society for Investigative Dermatology Meeting.
Plan to join our annual collaborative event with top scientists in the rare skin disease space. As you make your travel arrangements, be sure and include time to enjoy to our traditional (and super fun) IPCC dinner the night before on May 6th.
Registration is free for interested researchers and medical professionals, but you must pre-register. Industry representatives are welcome to join in exchange for a sponsorship of the symposium or a donation to PC Project.
Finding Hope With a Rare Disease: How PC Project Made a Difference for Our Family and Others
Claudia, from Spain, wrote this article for Giving Tuesday to spread awareness about PC and PC Project:
I would like to tell you about a non-profit organization which I am deeply grateful for. I came to know PC Project in 2015, after my baby was diagnosed as a spontaneous Pachyonychia Congenita (PC) case.
PC is a genetic, chronically debilitating disorder, characterized by disabling pain which limits walking, and has thickened nails and thickened skin, especially on the soles of the feet and palms.
Dealing with ultra-rare conditions such as PC can be terribly lonely. On top of the actual disease, patients and families face a lack of medical knowledge which makes the task of even finding a doctor to lead the diagnostic process or treatment even more difficult. Additionally, most people have never seen another person with PC (unless they are related), which adds to the feeling of solitude.
PC Project really came through for us, and I believe for PC patients and their families everywhere. They:
- Offer free genetic testing
- Manage the International PC Research Registry (IRB-approved)
- Organise Patient Support Meetings: Educational gatherings where patients can meet, teach and support one another; alongside physicians, scientists and pharmaceutical representatives.
- Encourage research and industry partnerships, as well awarding grants to fund PC-related projects.
And they do it with such a special, human touch, that they are able to help us stay hopeful even when life gets rough.
So with the holiday season coming up, I invite you to donate to PC Project here.
Or here if you live in the UK (or Europe):
The best part is that all donations this season will be matched twice by another generous donor!
Patient Perspective: Enduring Pain, Finding Strength
“Except for a few months during my infancy, I have experienced PC pain every day of my entire life, including:
Blistering of my feet from the shearing pressures of walking (at times, up to 80% blistering of the surfaces of my feet to include the ever present secondary infections).
Wearing shoes has always been painful. Over the years I found I need a hard sole shoe that provided me with an even landing surface for my feet as I walk.
The hard sole minimizes the shearing action and the resulting blistering friction. I usually opt for wide width and often a size larger than indicated, to make room for padded inner soles and perhaps two pairs of socks.
Infection to my nails resulting from trauma to the nail (severe pain lasting until I would lose the nail).
Varying levels of pain from medical procedures:
Injections of antibiotic (typically penicillin and often a thick version with extreme pain during injection).
Draining of fluids from infected nails and blister sites (often painful, but worth it because of the immediate relief).
The use of painful solutions that included alcohol and other stinging/burning substances (usually aimed at “killing the opportunistic bacteria”).
At age 9, my parents decided to opt for surgical removal of my nails. I experienced severe pain during the weeks of recovery. The procedure resulted in approximately 60% removal of the nail beds on my fingers and about 90% on my toes. A significant improvement, though I continued to experience infected nails when they were traumatized.
At age 14, my family physician was allowed to use a targeted heat device to treat (burn) a one half inch diameter section of my left foot. The local anesthesia was not very effective and the pain was severe. Recovery from the “burn site” was long and painful.
The psychological and social implications that come with PC have been significant and painful for me:
Embarrassment
“Unsightly nails” (I developed a habit of clinching my fingers to hide my nails)
“Walking with a limp”
Avoiding interaction with my friends and peers
The pain that comes with PC ironically has a positive side. I believe one who endures the pain of PC is a very brave person with a unique and valuable character. Many years ago, one of my doctors paid me a high compliment when she said, “You have learned to manage one of the most difficult diseases we know.” A PC’er should also note that your family and friends are the absolute best. They accept you as the person you are. PC is simply part of who I am!”
-Terry, PC patient
We invite YOU to share your story with us to spread awareness and help others know they are not alone.
For those who wish to make an in-kind donation of appreciated securities, 401Ks, IRAs, etc. to PC Project now, or at any time of the year, please contact us at 801-987-8759 or info@pachyonychia.org. We will provide you and your financial advisor with details to make this tax-saving process easy.
