PC Project is a small, mainly volunteer-run charity. We rely mainly on the support of our volunteers and of individual donations as we fight for a cure for PC.
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
We are so lucky that we have doctors and scientists who want to help us better understand PC, why it hurts so much, and how we can stop the pain! To do this, those with PC can occasionally be asked to participate in research studies or to fill out questionnaires asking about their PC. These studies and surveys are really important as they bring together everyone’s experiences and can provide more evidence about PC, how PC feels, and what treatments work. PC Project will occasionally send out requests to help with research and if you receive one, please help us out by participating.
Awareness and fundraising
Two major things you and your family can do to help PC Project are to raise awareness and raise funds! These two activities are closely linked and they both help build a strong community and show people who make the decisions on whether to fund research into PC that people around the world care about the condition and want a cure! Please know that all your efforts and individual fundraising efforts make a real impact when applying for research grants and seeking corporate sponsorship funding.
Keep an eye out for the month of June. This is when we have PC Awareness activities around the world! But of course, you don’t need to wait until June to get involved!
Awareness Raising
By now you will know how rare PC is! In fact, it is so rare that you and your family members (if they also have PC) may be the only ones in your town or city who have PC. For example, there are only 40 known people confirmed to have PC in Australia! With over 25 million people living in Australia, that’s a really, really small number of people who have PC! Of course, we think there are more there and we just don’t know about them yet!
This small PC population means that you are the one to represent PC in your area – you are the ‘heart’ of PC where you live! Simple ways in which people have raised awareness of PC are handing out leaflets, sharing PC posts on social media, or just talking about PC to their family and friends. PC Newsletters are also a great way to share information about PC. You can forward these to your family and friends. Don’t worry if you are shy–start small and work up to what you are comfortable sharing. What matters is that you are part of a larger PC community effort and that together we can succeed in raising awareness of PC.
Fundraising
The best advice we can give you when thinking of fundraising activities is to choose something you already know and like! Any action that will be fun for you and for your family and friends is perfect! For example, if you like cycling, then a sponsored bike ride may be a great way to raise money. Or if you like cake (and who doesn’t?!) a bake sale is a great idea. Your action may be LARGE or very small and may raise only $1 (or $100,000!). All actions are great and all help PC Project’s mission to stop the pain of PC!
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.
