Together we are raising funds and awareness for PC.
Sponsoring an event in your local community is a good way to to raise awareness and raise funds. This event can be held at any time or several times during the year. Your event may be large or small — whatever may be of interest in your local area. There are a number of resources available to help you plan your event. The Step By Step Fundraising website and their guide, “5 Keys for Successful Fundraising
PC Stars
Here are only a few fundraising and awareness events that have been held over the years to give you some ideas. We would love to feature your event. Please send information and photos about your event to info@pachyonychia.org.
PC Awareness – June 2023
Every June, those of us living with Pachyonychia Congenita (PC) – plus our families and friends who love us – come together around…
4L Trophy Driving for PC Awareness
Maéva et Élisa sont amies et toutes les 2 élèves vétérinaires de Toulouse. Passionnées d’aventure, elles décident de participer au 4L Trophy. Pour…
PC Fundraiser: Quinoa Harvest and Andean Festival 2022
What do a Quinoa Harvest and Andean Festival and PC Project have in common? They’re both all about improving the health and lives…
Guess How Many Gumdrops
A family in Southwest Wales held some fundraising activities at their son’s school. Their son did a guess how many gumdrops are in the jar and raised £32! The family also sold craft bits that they made as part of their new craft venture, Cinnamon and Timbit and sold £57 worth. This provided the family with the opportunity to speak to many parents and teachers about PC.
Garage / Yard Sales
The McGrath, Filoso & Sands families hold an annual garage/yard sale as their PC Awareness Kick off over Memorial Day weekend. In 2013 during their 2nd sale and despite stormy, cold and very windy weather at the beach, they were able to raise almost $300 during the 2-day garage/yard sale.
We have heard of other families holding garage/yard sales for PC.
Cycle Rides
Kieren Eyles cycled from London to York. Read this short photographic story of the ride. Jul 2011
Tom Baker cycled 300-miles around Wales to raise money for PC. Read this news article about PC. Sep 2010
Philip Gard also cycled to raise funds for PC.
Giving Tree
A family had a PC Giving Tree for Christmas at their school. Dec 2010
Craft Sales
Judith Hutton has craft sales to raise funds. In 2008 she attended the Patient Support Meeting in Pitlochry and presented on her fundraising successes. Read Judith’s letter on how she raises funds. Jul 2008.
Pedaling for PC
PCer, Nathalie Kilchoer and her family organized 9+ years of annual spinning marathons to support the PC mission.
The concept was that each person could choose to pedal one hour or more. In all, there were more than 250 people who pedaled for six hours on 80 bikes.
Chess Tournament
Beatrice Wannamaker held a annual Chess Tournament each year from 2010-2015 and gave proceeds to PC. Beatrice passed away unexpectedly in 2015 and is deeply missed.
Dinner
Monica Costa invited family and friends to a dinner. During dinner she educated them on Pachyonychia Congenita and handed out brochures.
Birthday Party
This family holds a birthday party each year for their daughter who has PC. In lieu of presents they ask for donations to PC Project. Their daughter has a blast at the party and still gets presents from her parents.
Swimming Event
Kieren Eyles swam in the ocean to raise funds and awareness for PC. He spent much of PC Awareness Month training and advertising for the event. His goal was initially to raise £500, but in the end, he raised over £1000!
Bake Sale
Monica Costa invited family and friends to a dinner. During dinner she educated them on Pachyonychia Congenita and handed out brochures.
Recycling for PC
Bob McLean sold a tractor, recycles metal and held a Car Rally Event and donated all proceeds to PC. You can also donate your old cars easily, see how you can help page.
The First Four PC Awareness Years
2012
Awareness Events Report 2012 is a six page quick summary of most of the 2012 events. Awareness Events List 2012 is a one page flyer used to advertise some of the 2012 events.
2013
2014
2014 Event List: These are just a few of the events put on by the PC Community.
2015
Visit the PC Facebook Awareness Event page for details.
It takes millions of dollars for clinical trials plus costs for research and patient services. Both the percentage of patients in the IPCRR and the number helping in fundraising efforts greatly matters to grant funding and sponsors.
