8. Supporting PC Project and the PC Community

PC Project is a small, mainly volunteer run charity.  You can find out about our history here: https://www.pachyonychia.org/history-pc-project/. We rely mainly on the support of our volunteers and of individual donations as we fight for a cure for PC.  There are many simple ways you can help us support us.

Join the International PC Research Registry (IPCRR)

Joining the International PC Research Registry (IPCRR) is the most important action a PC patient can take.  The registry collects data on the numbers of people who have been genetically confirmed to have PC, where they live and other important information. 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 are interested in finding a treatment for PC.  Each and every single patient in the IPCRR is very important, so please join and encourage everyone with PC in your family to do the same.  To find out more information at https://www.pachyonychia.org/patient-registry/

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 be asked to participate in research studies or to fill out questionnaires asking about their PC.  These studies are really important as they bring together everyone’s experiences and can provide more evidence about 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 14 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!

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 NewsBriefs are also a great way to share information about PC. You can forward these on 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.

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. Please contact us. You can find flyers to print and share with others here (https://www.pachyonychia.org/pc-pamphlets/).  Below are a few ideas and events that children have successfully completed.  Our website (https://www.pachyonychia.org/fundraising-archive/) also contains a list of some of the fundraising activities that people have done in the past.

Awareness and Fundraising examples

There are many things that children can do to raise awareness and funds for PC Project.  https://www.pachyonychia.org/pc-awareness/#awareness 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 a idea of what it feels like?  A PC family in the United Kingdom organised a sponsored Lego Walk! Children raised money and then had to walk two metres on Lego bricks which hurt! The family also put on a BBQ and made a social evening of it.They were amazed 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 organise 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

PC Kids Corner:

  1. What is PC?
  2. Explaining your PC
  3. Bullying
  4. Managing your PC at home
  5. Managing your PC with a professional
  6. Living with PC
  7. For Parents and caregivers of children with PC
  8. Supporting PC Project and the PC Community
  9. PC kids and teens- The brilliant things kids with PC are achieving!

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Category: PC Kids Corner