Every step hurts.
From the Bottom of Our Hearts — Thank You!
Our first-ever Peer-to-Peer Fundraising Campaign was nothing short of extraordinary — and it’s all thanks to you, our amazing PC community.
Together, we not only reached our $50,000 goal… we surpassed it! With the help of 193 generous supporters, we raised more than $50,000, and thanks to a powerful matching gift, over $150,000 will go directly toward PC research, patient support, and building a brighter future for everyone living with pachyonychia congenita.
This milestone was fueled by the courage and passion of individuals and families who shared their PC stories with friends, relatives, and colleagues. Every social media post, every conversation, and every donation, big or small, helped spread awareness and hope farther than ever before. One student in the UK raised over $800 from small gifts of $5 and $10, showing that every effort and every dollar truly matter.
We’re deeply grateful to everyone who donated, shared, or cheered us on. You’ve shown what’s possible when our global PC family comes together with one goal: to improve lives and accelerate progress toward better treatments and one day, a cure.
What’s Next?
This is just the beginning. Thanks to the momentum you’ve created, we’re already looking ahead to our next big opportunity: Giving Tuesday this fall. Stay tuned for details on how you can join us again — and help us build on this historic success.
From the bottom of our hearts (and our feet) — thank you for being part of this remarkable journey.
End the Pain Campaign Information
For people with Pachyonychia Congenita (PC), walking can feel like stepping on broken glass. The pain is real—every day, every step. But you can help change that.
Join us for the End the Pain campaign and raise your voice—and funds—for research, support, and hope.
Click one of the links below, depending on where you are in the world, or text “ENDTHEPAIN” to 53555 to get a link sent to your phone. From there, start fundraising by setting up your own page with your own story. Then share it with your friends, family, and acquaintances. (Scroll down for more detailed instructions.)
Because we are an international charity, choose the platform you would like to use to raise funds. The GiveButter platform accepts donations from all over the world, but will process them in USD. JustGivingUK supporters can donate in GBP, USD, EUR, CAD, or AUD, and those who are employed in the UK can add Gift Aid to their donations.
See video instructions below, if needed.
What is the Campaign?
End the Pain is a peer-to-peer fundraising campaign to raise money to help support research and people living with PC. Because we are so rare, we need to widen our community so more people will know and care about the life-changing work we do! Everyone will be able to create a personalized fundraising page to share with their networks, including friends and family.
Our goal: Raise $50,000 during September to fund research, and provide patients around the world with individual and community support, and in many cases, a diagnosis.
Thanks to a generous donor, every dollar you help raise will be matched 2-to-1—tripling your impact.
How You Can Help
We’re asking you to become a fundraiser for the campaign. It’s simple—and powerful.
When you sign up, you’ll get:
- A personal fundraising page you can customize and share
- A storytelling toolkit (scroll down for toolkit) with ready-to-use messages and graphics
- Support and encouragement from the PC Project and the Advocates
You don’t need to be a professional fundraiser. You just need to care.
How to Join
- Click the button below to create your fundraiser page.
- Customize your story (we’ll help with ideas and prompts – see below!).
- Share your page with friends, family, co-workers and any other contacts throughout September.
Questions?
Want help writing your story or customizing your page?
View the kickoff how-to recording or email us anytime at info@pachyonychia.org.
About PC Project
Pachyonychia Congenita Project (PC Project) is the only organization in the world dedicated to serving individuals and families affected by Pachyonychia Congenita (PC). This painful, rare skin disorder causes the development of thick, blistering calluses on the feet and other areas, making everyday activities like walking or standing extremely painful and sometimes impossible. PC can also affect the nails, mouth, and skin, and often impacts multiple family members (or can occur from a spontaneous gene mutation).
Donations support every stage of the patient journey—from helping people receive a diagnosis, often for the first time ever, to providing individual and community support. PC Project also funds and drives targeted scientific research to discover treatments and, ultimately, a cure.
Together, we can end the pain of PC—one step, one story, one breakthrough at a time.
Storytelling Toolkit for End the Pain Fundraisers
Why Storytelling Matters
People don’t just give to causes—they give to people they care about and stories that move them. By sharing your connection to PC and why you joined the End the Pain campaign, you’ll inspire others to care too.
This toolkit will help you:
- Share your story (even if you’re not sure what to say)
- Use email and social media to ask for support
- Feel confident and supported every step of the way
Telling Your Story
You don’t need to write a novel. You just need to be real. Choose what feels most comfortable and meaningful to you.
Suggested Story Prompts:
- Why did you decide to join the End the Pain campaign?
- What do you want others to understand about living with PC—or knowing someone who does?
- What does “ending the pain” mean to you personally?
- What kind of support has PC Project provided for you or a loved one (diagnosis, care, research, connection)?
- Why does this campaign matter right now? (Strong need for research funding, for example)
- What’s something you wish people understood about what it’s like to live with PC?
- Can you share a moment (big or small) when the pain of PC really affected your day — or changed how you had to show up as a mom, friend, or worker?
- How did you feel when you finally received a diagnosis?
- What did it mean to you to know there was a name for what you’d been experiencing?
- What gives you hope today?
- Why are you supporting this campaign to “End the Pain”?
- What would you say to someone thinking about joining or donating?
Story Template (You Can Copy & Edit to Make it Personal to You):
I’m fundraising to help End the Pain for people living with Pachyonychia Congenita (PC), a rare and incredibly painful skin condition.
I am doing this because [insert your reason: I have PC, my child does, my friend does, I want to help].
PC Project is the only organization in the world dedicated to helping patients—they give people a correct diagnosis, individual and community support, and most of all, they fund real research.
Every dollar I raise will be TRIPLED through a 2-to-1 match. That means your $25 gift becomes $75.
Please give today. Together, we can end the pain—one step, one voice, one breakthrough at a time.
[Insert your custom fundraising page link]
Sample Ask Email (Or use the same message as your story above)
Subject: Help me end the pain
Dear [Name],
I’m doing something really meaningful—and I’d love your support.
I’ve joined End the Pain, a fundraising campaign for people living with Pachyonychia Congenita (PC)—a rare and painful skin condition.
This cause is personal to me because [insert reason].
I’m asking for your help. Even a small gift makes a big difference—and thanks to a generous donor, every dollar will be tripled.
You can donate here: [Insert your custom fundraising page link]
With gratitude,
[Your name]
Sample Ask Social Media Captions
Instagram / Facebook:
I’m stepping up to help end the pain for people living with Pachyonychia Congenita. PC causes extreme pain—every step can feel like walking on broken glass.
I’ve joined the End the Pain campaign to raise money for research, support, and hope.
Please donate here: [link]
Because of a double match, every dollar is tripled. Let’s bring healing to families like mine.
#EndThePain #PCProject #RareDisease #StepUpForPC
Twitter/X:
Every step hurts for people with Pachyonychia Congenita. I’m fundraising to help #EndThePain.
Join me: [link]
Your gift will be tripled. #PCProject
Images & Graphics
Utilize the following images, or use one of your own! POST IMAGES AND GRAPHICS HERE IN GALLERY
- Branded campaign graphics for social media
- Profile picture frames or overlays for Facebook/Instagram
- Instagram story templates with [Insert your custom fundraising page link]
- If you need help customizing a graphic, we’ll do it for you!
Timeline
- Now–Sept 1: Set up your page, customize your story, start spreading the word
- Sept 1–Sept 30: Actively share, email, post, and update your supporters
Tips for Success
- Start strong. Your first few donations create momentum.
- Share regularly. Don’t be afraid to post multiple times—people often need reminders!
- Say thank you! A quick message or public shoutout goes a long way.
- Be yourself. Your voice matters more than polish or perfection.
Need Help?
We’re here for you!
Email us at info@pachyonychia.org with questions or message us on social media.
Let’s end the pain—together!
