PC News Brief
Vol 18, No. 4
Jul-Aug 2023
With all that’s happened in our PC community lately, I wanted to share some realizations I had while cultivating flower beds this summer.
In early May, my husband bought a couple of flats of small flowers, not yet bloomed, to plant in the ground around our home. We had never before planted this type of flower and eagerly waited to see what they would look like. We carefully planted them where they would receive sunlight, and then watered, weeded, and did our best to nurture the green plants, hoping to have some pretty flowers during the summertime. After a few months, the stalks did grow, but the flowers never bloomed. I was disappointed and wondered if we would see flowers this summer or if our careful planting was for nothing.
Finally, in late July, almost overnight, all the care and cultivating efforts paid off! To my delight, bushes of flowers blossomed into vibrant colors all around my yard. They have given me so much joy these past weeks.
These flowers reminded me of PC Project. We started as a small organization that launched into uncharted territory. For years now, we have planted and cultivated ideas and programs, sometimes wondering if anything significant would ever come of our efforts. For me, that significant thing has always been effective treatments for PC and ultimately a cure. As I’ve enjoyed my late-blooming flowers, they’ve given me hope that someday, our time will come and we will have those treatments.
But recently, I realized it’s not correct to think that we have not already bloomed. Our time HAS come. We don’t need to wait for a cure to see the fruits of our labors. We are already enjoying them; we have an amazing patient community, a network of dedicated professionals, uplifting meetings, gatherings, support, and so much more. We are already blossoming.
And yes, just like I still care for my flowers, at PC Project we will continue to cultivate essential programs and services so they can keep on blooming. And one day, I fully expect to see a bouquet of treatments for PC patients. I’m grateful for the blooms we have already seen and look forward to enjoying the blooms yet to come.
– Janice Schwartz, Executive Director
PC Town Hall
PC Project will host a Town Hall on Saturday, August 26, 2023 at 10 am MT (12pm ET, 5pm UK).
This live Zoom meeting will include a short update on PC Project’s most recent activities, followed by comments from Dr. Edel O’Toole and Dr. C. David Hansen. Their remarks will be followed by a question and answer session and a chance for members of our community to talk with one another in an open discussion. We estimate the meeting will last approximately 30-45 minutes.
PC Grant Deadline!
Researchers, if you are planning to apply for a PC Project grant, the deadline is August 31, 2023.
We welcome any proposal that is focused on addressing the genetics, pathophysiology and/or treatment of pachyonychia congenita (PC). Relevance to PC will be considered a defining criterion during the review of the scientific merit of proposals and also when making final decisions regarding their funding.
Message to Palvella
Read a letter from Jack Padovano, the board chair of PC Project’s Board of Trustees, written to Palvella’s CEO, Wes Kaupinen, and company after the results of the phase 3 clinical trial were released last month.
PC Project is grateful to Palvella and all drug developers who are working to find effective treatments for PC.
Sol Gel Phase 1 Study
The Sol Gel Phase 1 trial for SGT-210 is ongoing. A statement from Sol Gel reads: “Erlotinib ointment 3.5% and 5% were investigated by Sol-Gel on healthy volunteers in maximal use condition. Following 28 days of daily application all 12 subjects have completed the study. In general both Erlotinib ointment 3.5% and 5% are considered to be well tolerated, no systemic absorption-related adverse events were reported.”
PC Gathering in DC Area
PC Project will be in Washington DC for a NIAMS Coalition Day in September. If you live in the area, we invite you to join us for a brunch and informal gathering on September 20th at 10am ET.
We just can’t resist trying to meet with others in our community when we are in different areas!
Learn more and indicate if you and your loved ones would like to join us.
Fundraiser for PC
Dr. Roger Kaspar is hosting a fun and unique fundraiser for PC in Panguitch, Utah (near Bryce Canyon National Park) on September 23, 2023. This will be the third Quinoa Harvest and Andean Festival.
If you are in the area, come join us as we eat yummy Peruvian food and learn about nutritious quinoa.
Instagram Live
If you didn’t watch live on Instagram or Facebook, you can still view Amit Parikh as he talks about his experiences while living with PC.
Amit is a technology professional with experience as an industry operator and management consultant. He clearly is not letting pachyonychia congenita stop him from being successful in life.
GRIDD Survey
GlobalSkin, an international organization PC Project partners with, is sponsoring a huge project about the impact of living with skin conditions like PC. The survey only takes 10–20 minutes and will help validate the very real and difficult challenges patients like you face globally. PC patients are invited to represent PC and can choose the language they prefer when they click on the link: globalskin.org/GRIDDStudy
When There is a Cure for PC
The last PC newsletter featured an impactful Word Cloud generated from words patients used to describe PC. This month’s Word Cloud reflects the way patients will feel when someday, there is a cure for PC. The words themselves say everything we need to know about why getting a cure is our goal.
