PC Newsletter

PC News Brief Mar-Apr 2023

May 17, 2023 by Pachyonychia

In this newsletter, you will read just a fraction of the activities happening in our strong, global community. During the past months, more than ever, we have seen evidence of what can be accomplished when people, with their unique talents and abilities, work together. Every person’s part is important – the patients who join the registry, the families and physicians who care for them, the researchers, the pharmaceutical companies, the generous donors, our PC Board and MSAB members, and all others who give in their sphere of influence.

At PC Project, we are often awed by what is being accomplished because of the outstanding and collective efforts of so many. And at the core of our efforts are the patients we love. If you have PC, or even a similar skin disease, we are here for you and we will never stop working for you until we have a Patient Celebration Meeting instead of a Patient Support Meeting!

2023 New Orleans Patient Support Meeting

On March 15-17, PC patients and their loved ones gathered together for the first in-person Patient Support Meeting since Covid-19 cancelled our 2020 meeting, along with PC physicians, researchers, and pharmaceutical representatives. We learned, we laughed, and we encouraged one another! Thank you, Palvella Therapeutics, for your help in sponsoring this uplifting meeting. Read more and see photos of the meeting on our website:

pachyonychia.org/2023psm/

PC Patients Represented on the Hill

PC Project joined other patient organizations in the Coalition of Skin Diseases in Washington DC on April 25th to advocate and raise awareness for skin diseases like PC. The PC patient story was told over and over that day – on camera for a special film, in congressional offices, and on a panel at a congressional luncheon and briefing. Special thanks to Mike Siegel, leader of the Pediatric Dermatology Research Alliance, for teaming up with PC Project.

Read More

Special Session at AAD for PC and other PPKs

At the 2023 American Academy of Dermatology (AAD) Annual Meeting, PC and other painful conditions with PPK were featured in a special focus session “Palmoplantar keratoderma (PPK): step by step” on Saturday, March 18, 2023. To our knowledge, this is the first time rare PPKs like PC were highlighted at this prestigious meeting. Many thanks to Prof. Eli Sprecher for applying for and directing this session on our behalf.

Read More

Kamari Pharma’s Clinical Trial for PC

Kamari Pharma is happy to announce the initiation of a new study in the UK to evaluate the safety and efficacy of KM001-a new potential treatment for PC and PPPK1 patients.

Read More

Palvella Clinical Trial Update

Results of the Phase 3 Clinical Trial will be available later this summer. Many thanks to all PC patients in the US and the UK who have participated or who continue to participate in this study, the first of its kind for PC.

Read More

PCers Needed to Answer 4 Questions

We are planning to update our FDA Voice of the Patient Report from 2018 within the next few weeks to demonstrate that PC patients still need effective treatments. We know we have asked you patients to fill out a lot of surveys lately for different and very important projects. Please, will you complete another survey, this time with only four questions, about living with PC? Your participation is needed!

Click to complete survey

CSD Development Day in New Orleans

In conjunction with the AAD Annual Meeting in New Orleans, the Coalition of Skin Diseases (CSD) gathered its members on March 18 to help them learn to operate their groups more effectively. PC Project was asked to speak and share why and how our International PC Research Registry is so powerful in helping patients receive a correct diagnosis and in advancing research and drug development for our rare disease.

Read More

Camp Discovery

The American Academy of Dermatology sponsors five one-week sessions of Camp Discovery – a camp designed specifically to meet the medical needs of kids living with chronic skin conditions like PC. Provided at no cost to families, including airfare.

Read More

Board Chair Message

Jack Padovano, the chair of PC Project’s Board of Trustees, shares a short, compelling message in the video above about why he spends so many hours volunteering for PC Project and PC patients. Thank you, Jack, for your commitment to this important cause!

IPCC at ISID

At PC Project, we are busy preparing for our annual IPCC Symposium on May 10th. Skin researchers from all over the world are heading to Tokyo to attend a large conference of the International Societies of Dermatology.

With the help of our PC Steering and Research Committees, we will strategically hold our own symposium in conjunction with the larger dermatology conference. We are excited to collaborate with new researchers and discover innovative ways to help PC patients.

Check out the impressive list of symposium presenters.

Patients Highlighted at Congressional Briefing

Executive Director, Janice Schwartz, spoke about PC and PC patients to US legislators and their staff during a special congressional briefing and luncheon with other patient advocacy organizations for skin diseases. Janice stressed that if each of us does what we can in our own sphere of influence, and we all work together, we will truly help patients who suffer with PC.

June is International PC Awareness Month!

Stay tuned for more information about this fun time of year and be thinking of what you can do in your part of the world to raise awareness about PC!

PC Newsletter Jan-Feb 2023

February 3, 2023 by Pachyonychia

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!

Learn more

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.

Survey 1: Erythromelalgia Survey

Survey 2: FFI Survey

Survey 3: QoL Survey

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!

PC Newsletter Nov-Dec 2022

January 20, 2023 by Pachyonychia

Happy Holidays and PC News

A Season of Giving and Thanks

As we approach the end of the year, I think about all the families and individuals

we’ve helped navigate life with PC. One particular individual comes to mind. Before finding PC Project through an internet search of his symptoms, this young man was discouraged, depressed, and felt like his painful life didn’t have meaning. Once he finally received a correct diagnosis through our registry and started connecting with our positive PC community, he told me that he has found purpose and happiness in his life.

It’s stories like that (and there are many of them!) that inspire me to continue the work that needs to be done, including the not so fun job of fundraising.

I am sincerely grateful for the outpouring of kindness shown by all of you these past months during our Giving Tuesday and Year End campaigns. If you know me, you know I don’t like to ask for donations. It’s awkward and uncomfortable for me. And yet we all know, if PC Project isn’t here to help patients and advance research and drug development for PC, no other organization exists that will. And frankly, we are proud of what we’re accomplishing and the lives we are changing.

And all we do is possible because of each one of you. What’s more, all donations made to PC Project before the end of the year 2022 will be matched twice by yet another giver who cares very much about our work.

In addition to your monetary gifts, thank you for your encouragement and motivation all year round. At PC Project, we are just regular people doing the best we can to make a huge difference in our disease space. Your support in all ways means the world to us.

As we prepare for another year of exciting plans and possibilities, thank you for another incredible season of giving and for making our important work possible. May you enjoy the best gifts of this holiday season, the same gifts you’ve given us – love, hope, selflessness, and goodness. – Janice Schwartz, Executive Director.

PC Patient Meeting Recording Now Available

We loved gathering with so many of you last month! If you didn’t have a chance to join us live on November 19, 2022, the recording is now available on the PC YouTube Channel. Note: The breakout sessions were not recorded.

Special thanks to the medical and scientific professionals who donated their time and expertise at the meeting, namely Drs. Ofir Artzi, Al Bravo, Tracy Funk, Randy Gilliland, David Hansen, Angela Hernandez, Robyn Hickerson, Alain Hovnanian, Roger Kaspar, Joyce Teng, Edel O’Toole, and Eli Sprecher. Are you as impressed about the group of experts on our PC team as we are?!

Also, a huge thank you to our dedicated patient advocates, Helaine Alessio, Tom Baker, Al Bravo, Kate Fairbrother, Pamela Ibanez, Roseann McGrath, and Jack Padovano who led discussions.

PC Project operates with a very small staff. But with the help of so many good people, even though we are small, we are mighty – and we are definitely #StrongerTogether!

Learn More

Important Details and Dates to Remember!

We are excited to host our first in-person PC Patient Support Meeting since 2019 in New Orleans, Louisiana! If you are interested in attending, please note these important dates and details:

The meeting will start the evening of March 15 and end with lunch on March 17, 2023.

Wednesday, March 15: Check in, Dinner and Welcome Program
Thursday, March 16: All day programming, discussions, and meals
Friday, March 17: Half day programming and lunch

Coinciding with the main meeting will be a program for children.

Regarding meeting fees:

Meeting fees are waived for PC patients attending a Patient Support Meeting for the first time and one family member or companion.
Early registration fees are discounted until January 15, 2023
All fees must be paid by February 13, 2023
Scholarship deadline for travel assistance is December 31 (Scholarships will be announced by January 6, 2023)

For more information, including where and how to book your hotel room, please see website.

If you have questions, please contact us at info@pachyonychia.org. And if you are a dermatologist planning to be in town for the AAD meeting, we’d love to have you join us!

Palvella Phase 3 Trial Fully Enrolled

Thanks to the extraordinary efforts of our PC team, including the participation of genetically confirmed patients in the International Pachyonychia Congenita Research Registry, dedicated trial site doctors and coordinators, and our partners at Palvella Therapeutics, the ongoing Phase 3 Trial is now fully enrolled!

This trial is designed to evaluate the effectiveness of topical QTORIN rapamycin 3.9% in PC. Results are expected June 2023.

This is a perfect example of when we work together, we can accomplish big things. We hope this will be the first of many more phase 3 trials for PC treatments!

Birthday Fundraisers

We are so thankful to those who have chosen to celebrate their birthdays by making a Facebook Fundraiser to support PC patients.

We have noticed that the most successful fundraisers are those that tell personally WHY they support the work of PC Project and who donate even a little bit themselves to show they believe in the mission.

Not sure how to create a Facebook Fundraiser? Just go to our Pachyonychia Congenita Project page on Facebook, click Fundraisers, and then click Raise Money. From there, you can see how to set up your fundraiser and especially how you can personalize it. Again, thank you for remembering PC on your special day!

Why I Volunteer for PC Project

As we are officially in the holiday season of giving, we leave you with a video by Roseann McGrath, one of our PC advocates who shares why she gives of her time and talents. PC Project operates successfully in large part because of our dedicated volunteers. Thank you, Roseann, for your service!

PC News Brief Vol 17, No. 4 Aug-Oct 2022

December 8, 2022 by Pachyonychia

Greetings from PC Project!
This month, we are experimenting with a new way to bring you our news. Please check out the sections below for some of the happenings in our PC world.
Most of all, never forget that we are always fighting for every patient in our community, and we appreciate the efforts each one of you bring to our special, global team!

Virtual Patient Meeting

Join with the PC community on November 19, 2022, from 8am-12pm MT (10am-2pm ET; 3pm-7pm UK time) for a few hours of presentations and discussions! The meeting will be free and held in a Zoom meeting format.
Because we want to be inclusive to as many people as possible, like last year, we will use the translation software Wordly, which translates the spoken English words of the meeting into spoken and/or written languages. Learn more and register

Patients in Amsterdam

On Tuesday, September 27, 2022 at the Beurs Van Berlage Conference Center, patients and family members gathered for an afternoon meeting that included socializing, lunch, and a chance to meet others who understand what it’s like to live with PC.
Some of our fantastic PC scientists and doctors attended to answer questions, present information about PC, and show patients there are professionals who truly care about PC and PC patients! Read more and see photos

PC Leadership Meeting

Key members of the PC Project Medical and Scientific Advisory Board met in Amsterdam on September 28, 2022 for a robust 6 hour strategic planning meeting, organized under the leadership of Eli Sprecher and Pierre Coulombe. The goal: To make PC Project operate even more effectively and efficiently, with the help of an excellent team of researchers and clinicians. Read more and see photos

ESDR Meeting 2022

PC Project was invited to display and share information about PC at a patient village at the ESDR (European Society of Dermatology Research) Conference, September 28-30, 2022. Thanks to the graciousness of the ESDR leadership for the opportunity to attend sessions, educate researchers about PC, and to network with additional doctors and scientists about joining the the PC fight! Read more and see photos

PC Fundraiser: Quinoa Harvest and Andean Festival

What do a Quinoa Harvest and Andean Festival and PC Project have in common? They’re both all about improving the health and lives of others! One of our PC researchers, Dr. Roger Kaspar, planned and hosted the event on a fun Saturday full of Peruvian music and food, education, and hiking (ATV transportation for PCers) in Panguitch, Utah on Saturday, September 17, 2023. All proceeds went to support PC Project. Thanks to Dr. Kaspar for his commitment to PC patients – in and outside of the research lab! Read more.

Minnesota Patient Gathering

PC Project spent a few days in the land of 10,000 lakes with a special group of PC friends. On August 12-13, 2022, we hosted a small patient gathering in Minneapolis, MN. Some patients were there to be screened for a clinical trial. Others simply came to encourage one another and feel the strength of the PC community.
We are grateful for these awesome people who show up for clinical trials (essential for getting therapeutics approved) AND who show up for each other. These gatherings are a good reminder of how meaningful it is for patients who have never known another person with PC to finally meet someone who truly gets what it’s like to deal with this unique and rare condition! See pictures from the event and learn more

The Power of Genetic Testing

In an article called, “We Need to Talk about Zebras,” Dr. Neil Rajan and Genomics England highlight the need for diagnostic genetic testing.

Most patients who join the International PC Research Registry do not have a correct diagnosis for their condition. Two patients who joined and received free diagnostic genetic testing through PC Project were interviewed for the article. Thanks to Tom Baker (PC) and Alan Bentley (OS) for sharing your important video stories. Read the article and watch the interviews.

Gifts for Our Future

Last spring, one of our beloved PCers,
Nancy Bohnsack passed away after a short but valiant fight against cancer. Unbeknownst to us, Nancy graciously left a portion of her estate to PC Project. Although we didn’t know we were part of her will at the time, now Nancy will always be a member of PC Project’s Legacy Society, a special group of people who have included PC Project in their long-term gift planning.
In fact, several years previously, David Wittmer, another dear PCer, passed away and left his estate to PC Project. David’s gift was the catalyst for establishing PC Project’s long-term sustainability fund which ensures that we will continue to fight for patients for many years to come.
We are humbled by the goodness and generosity of our PC community and invite you to consider being part of this special Legacy Society. Learn about the PC Legacy Society

Amy Paller, PC MSAB Member, Receives Award

Congratulations to Dr. Amy Paller, a members of PC Project’s Medical and Scientific Advisory Board, for receiving the Society for Pediatric Dermatology’s first Hall of Fame Award during its 47th Annual Meeting in Indianapolis on Sunday, July 10.
The criteria for this honor includes being an SPD member for at least 30 years and having made substantial contributions to the organization and field of pediatric dermatology.
Dr. Paller has been a compassionate physician for PC patients for many years and a fantastic collaborator in the International PC Consortium. Read more

Plan now to attend, especially if you live in the United States. More registration details will be available soon.

NOTE: Our patient meeting will be held right before the American Academy of Dermatology Annual Meeting in New Orleans, where several of our PC dermatologists/researchers will be speaking about PC and other diseases with painful palmoplantar keratoderma. We invite dermatologists who are going to the AAD to not only plan to attend our PPK session (March 18, 2023), but come early and join our special patient meeting.

IPCC Newsletters Archive 2004-2022

January 20, 2021 by Pachyonychia

Each link contains a pdf with all issues for each year.

You can click on the picture or the year to get to the pdf. The website search on the top page also searched these pdfs. Also, if you have the pdf open you can use “ctrl f” to search inside the pdfs.