PC Project is a small nonprofit organization powered largely by dedicated volunteers. Our work depends on the generosity of volunteers, donors, and supporters around the world as we strive to improve the lives of those affected by PC and advance research toward better treatments and, ultimately, a cure.
You can find out more on the About PC Project page. There are many simple ways you can help us support us.
Join the International PC Research Registry
Joining the International PC Research Registry or patient registry is the most important action a PC patient can take or a parent can take on behalf of their child with PC. The registry collects data from the people who have been genetically confirmed to have PC. This provides an evidence base about the condition which then guides research and developments for treatments. Also, the larger the registry, the more likely researchers and drug development companies will be interested in finding a treatment for PC. Each and every single patient in the registry is very important, so please join and encourage everyone with PC in your family to do the same.
Participate in research
PC Project is grateful for the doctors, scientists, and researchers who are working to better understand PC, why it causes pain, and how new treatments can improve the lives of those affected.
From time to time, people living with PC may be invited to participate in research studies or complete questionnaires about their symptoms and experiences. These studies are incredibly valuable because they bring together information from many individuals, helping researchers better understand PC, measure its impact, and identify treatments that may be most effective.
When opportunities to participate in research become available, PC Project may share invitations with the community. Every person who takes part helps advance knowledge about PC and brings us one step closer to better treatments and, ultimately, a cure.
Awareness and fundraising
Two of the most meaningful ways individuals and families can support PC Project are by raising awareness and raising funds. These efforts work hand in hand to strengthen the PC community, educate others about the condition, and demonstrate to researchers, funding organizations, and corporate partners that people around the world are committed to advancing PC research and finding a cure.
Every effort, whether sharing information, organizing a fundraiser, or making a donation, helps make a difference. Community support plays an important role when PC Project applies for research grants, seeks corporate sponsorships, and advocates for continued investment in PC research.
Be sure to watch for PC Awareness Month each June, when awareness activities take place around the world. Of course, there is no need to wait until June—there are opportunities to support the PC community throughout the year.
Raising Awareness
By now, it is probably clear just how rare PC is. In many communities, a person with PC may be the only one living with the condition. For example, there are only about 40 genetically confirmed cases of PC in Australia among a population of more than 25 million people. There are likely others who have not yet been diagnosed or connected with PC Project.
Because PC is so rare, every individual and family can play an important role in raising awareness. Simple actions—such as sharing educational materials, posting about PC on social media, talking with friends and family, or forwarding PC Project newsletters—can help others learn about the condition and increase understanding.
There is no need to do everything at once. Those who are more reserved can start with small steps and become involved in ways that feel comfortable. Every effort, no matter how big or small, contributes to a larger global movement to raise awareness of PC and support the search for better treatments and a cure.
Fundraising
The best fundraising ideas are often the ones that build on activities already enjoyed by the individual or family. Choosing something fun and meaningful makes fundraising more enjoyable for everyone involved. For example, someone who enjoys cycling might organize a sponsored bike ride, while someone who loves baking could host a bake sale.
Fundraising events can be large or small, and every contribution makes a difference. Whether an event raises $1 or $100,000, every effort helps support PC Project’s mission to improve the lives of those affected by PC and advance research toward better treatments and, ultimately, a cure.
PC Project can help advertise the events through our website and other social media outlets. We can provide PC flyers and help you contact your local news outlets as well. Below are a few ideas and events that children have successfully completed.
Awareness and Fundraising examples
There are many things that children can do to raise awareness and funds for PC Project. Below are just a few stories and ideas.
- Lego Walk for PC!
- Everyone knows how much walking with PC can hurt, so why not give your friends an idea of what it feels like? A PC family in the United Kingdom organized a sponsored Lego Walk! Children raised money and then had to walk two meters on Lego bricks which hurt! The family also put on a BBQ and made a social evening of it. They were amazed at how much their local community came out to support them. The Lego walk was combined with a Firewalk and raised over £5,700. If you would like to organize a similar event, the family is happy to share their tips! Please contact PC Project if you want to talk with that family.
- Spinning marathon
- Another family organized a one-day spinning marathon. Over 200 people participated, learned about PC, and raised biked to raise funds for PC research.
- Bake sale at a mountain bike race
- Bowl-For_A-Cure
- Ice Cream Social
- A “ThickSkin” Duathalon, with kid races
- Car Washes
- Archery Training
- Balloon release and craft sale
- Chess tournament and book fair
- Collection boxes in restaurants and stores
- Family BBQ with face pointing, tie dye, games
- Raffles and news articles
- Wrote in a blog about PC
- Family Chiropodist bake sell and flower sale (poppies)
- Shared something on social media about PC
- Baking and bingo for charity
And there are so many other ideas for raising awareness and funding for PC research! If you have a good idea, please share it with us at info@pachyonychia.org.
