PC News Brief
Vol 18, No. 1
Jan-Feb 2023
IMPORTANT: New Orleans PC Patient Support Meeting February 13th Deadline!
We are thrilled we will be seeing many of you at the upcoming PC Patient Support Meeting in New Orleans, March 15-17, 2023.
If you are planning to attend and have not yet, please reserve your hotel room through the link on our website before February 13. At that time, because our meeting overlaps with a huge dermatology conference, the hotel will release our reserved block of rooms.
You also need to register for the meeting itself by February 13 for our final meal count. More information is found on our website or contact us if you have questions. We can’t wait to be with some of you in person after several years of only virtual Patient Support Meetings!
The New Orleans PC Patient Support Meeting is co-sponsored by our partners at Palvella Therapeutics.
For Dermatologists Going to the AAD Meeting!
If you are planning to attend the AAD Annual Meeting in New Orleans, please come (and encourage your colleagues to come) to our focus session: Palmoplantar Keratoderma: Step by Step on Saturday, March 18 at 4:30 pm to learn the latest on PPKs, including PC. Most PC and PPK patients come to our registry without a diagnosis. We hope to change that by working with you!
PC Researchers Request Patient Input
PC Researchers have requested information from PC patients to better understand PC and it’s impact on patients. Below are three SHORT, but separate surveys that need to be filled out by PC patients. Your name and contact information will not be shared – only your de-identified answers.
If you have NOT already filled them out, please do so before February 11, 2023. And many thanks to almost 200 PCers who have already completed the surveys!
Please complete each survey using the buttons/links below. When you finish with the first one, come back to this email to complete the second one, then the third. Each survey is important and is for three separate projects.
Because of your incredible participation in the registry and in past surveys, we have learned so much about PC. All those surveys have resulted in publications that have brought greater PC awareness and understanding. We expect these latest surveys will do the same. Learn more on our website.
Note: We will start to remind those who took Survey 2 to do it again beginning mid-February as we need each person to take that survey once every month for three months. But don’t worry – it’s super quick!
Happy 20th Birthday PC Project!
This year marks our 20th year of serving PC patients! When PC Project was first established in 2003, nothing was being done in PC research or for patient support. Throughout 2023, we’re going to share some of our favorite milestones from the past 20 years to show how far we’ve come AND what we’re doing to make the next 20 years even better for PCers. We hope you will celebrate with us!
As part of our birthday celebration, this year, we ask all of you dedicated supporters to send birthday wishes to PC Project during YOUR birthday month by inviting your friends and family to donate $20 (for 20 years) to PC Project in you honor.
You can use the accompanying graphic to announce your plans, or you can create a birthday Facebook or Instagram Fundraiser instead.
New PC Project Logo
Because PC Project was founded on love for people who suffer with the genetic skin disease PC, our very first logo was a heart with a DNA strand in it. Along the way, we realized our disease is often misunderstood. Because “Pachyonychia” literally means “thick nails”, some professionals have thought we are only a nail disorder. But thanks to powerful registry data, we know for a fact that PC is much more than thick nails, and the most common feature is pain due to the calluses on the feet. So, we added a logo with feet to our library of icons.
Now, to celebrate 20 years, you may have noticed we have a brand new logo. We want to send a clear message to everyone about the true nature of PC – that the majority of patients deal with painful feet. We included in our byline exactly what we do – research and patient support. At the same time, we never want to forget what drives us each day – and that is our love for all of you in the PC community – patients, family, friends, researchers, physicians, industry partners, and all our teammates!
In Loving Memory: Ira Henry Beyer Sr.
The PC Project team offers our sincerest condolences to the family of Ira Henry Beyer Sr. His son, Ira Beyer Jr. and his daughter-in-law, Lori, are wonderful members of our PC community. Donations were kindly made to PC Project in lieu of flowers and in Mr. Beyer’s memory.
We are always humbled when people think of PC Project at these tender times in their lives. Read more about this very loved man.
For PC Patients in Clinical Trials or Studies
If you are currently in a PC clinical trial like the Palvella VAPAUS Phase 3 Trial or one of the smaller PC studies going on right now, THANK YOU!
Your participation is important and needed. Drugs for PC will not be approved without studies and trials. Even if you are in a study for a treatment that doesn’t seem to be working, your involvement is still critical because as important as it is to show that a treatment works, it is equally as important to show if it does not work, especially if you are receiving a placebo. And while we understand patients may need to drop out of trials for various reasons, for those who can stay, thank you for completing the entire trial.
Trials and studies take time and sacrifice. We so appreciate each of our amazing registry patients who are committed to helping not only themselves, but all others with PC!
Share the Love During the Month of February!
Is there someone rare and special in your life? Let us know and join us in our #MyRareValentine campaign! ❤️
Click here to submit your Rare Valentine. You will be asked to write a short description of why that certain person is wonderful and upload a photo. You can choose your child, husband, wife, best friend, mom, dad, doctor, siblings, caregivers, or anyone important to you. You can submit as many valentines as you want!
Then, we will make a post for you to share AND for us to share between now and through Valentine’s Day on February 14th! We’re so excited to spread the love throughout our PC community!
