PC News Brief
Vol 17, No. 5
Nov-Dec 2022
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!
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!
