PC News Brief
Vol 18, No. 5
Sept-Oct 2023
If you are receiving this newsletter, you are part of our PC family in some way. You may have PC, or a similar rare skin disease. You may be waiting for your diagnosis through our registry and genetic testing services, or you may already know what disease-causing mutation you have. You may be a family member, a friend, or a donor. You may be a researcher or a physician. Or just a really neat person who cares about people with painful, rare skin diseases. And most likely, you are more than one of those things. But no matter who you are, and no matter where you live in this world, we are mindful of you and we care for you.
Our organization is built on love, service, and collaboration. We feel your contributions of those three things deeply. And while this newsletter does not convey even a fraction of the work that is going on in our disease space every single day, we hope you know we could not do any of it without you. And yes, this may be a bit of a personal message for a news brief, but everything about PC Project and our mission is, and always will be, deeply personal. Love and hugs to you all! – Janice Schwartz, Director
PC Project Announces 2023 Grant Awards
On November 1, PC Project announced the 2023 PC Championship Research Grants, awarded to three scientists. The total amount comes to nearly $300,000 that will go directly to PC-specific research projects, each reviewed independently for their scientific merit and relevance to PC. This dollar amount is in addition to a two-year proposal funded by PC Project earlier this year.
Many thanks to the PC Scientific Committee for overseeing the 2023 grant cycle. We also express our heartfelt gratitude to the givers who have generously donated money for this very important cause. If we do not do this, no one else will. Funding drives research! Thank you for sharing our vision.
PeDRA and PC Lunch in Atlanta: Register today!
PC Project is excited to represent PC Project and our patients at the PeDRA (Pediatric Dermatology Research Alliance) Annual Conference in Atlanta, Georgia this week. A PC medical student, Ashley Wittmer, will be giving a talk and presenting a poster on the diseases in our registry that are not PC, but have similar features. (We care for all these patients!)
Because meeting with other rare disease patients is so important, after the conference ends, PC Project will gather for lunch in a private room with local PCers on Saturday, November 11 at 12:30 pm.
Patients, their loved ones, and medical professionals in the area are welcome to join the 20 people who have already registered to dine with us.
NIAMS Coalition Meeting 2023
As members of the NIAMS Coalition, PC Project representatives joined other patient advocacy groups on September 19th for a day of education hosted by NIAMS/NIH leaders. While there, PC Project also met personally with NIAMS directors to learn how to work effectively with this government agency to advance and fund PC research.
Quinoa and Andean Festival: PC Fundraiser
Against the magnificent backdrop of Casto Canyon near Bryce Canyon National Park and Panguitch, Utah, on September 23rd, Dr. Roger Kaspar and his family hosted a full day of entertaining and educational events. All proceeds went to PC Project to fund PC-focused research.
Learn more and see photos from this unique and fun PC fundraiser
PC Gathering in Washington, DC Area
Barbara Feinstein and Aaron Klein, parents of a PC child, graciously hosted in their Silver Spring, MD home, a group of PC patients and loved ones on September 20th. This gathering included a brunch and a chance to ask questions, meet others with PC, and share encouragement. Because PC is rare, meeting others who have this condition is always an emotional and uplifting experience.
Dermatology Times and JDNA feature PC
Over the past year, PC Project’s Executive Director, Janice Schwartz, was interviewed independently by two different journals, the Dermatology Times and the Journal of Dermatology Nurses’ Association. Both articles were recently published, raising awareness and helping those in the dermatology world learn more about PC, how it affects the patients, and the importance of receiving a correct diagnosis for a rare skin disease.
