The global GivingTuesday means so much to us. For this one day each year, generous people from over the world are focused on the impact we can make when we come together to support the causes we care about. Causes like finding a cure for PC in our lifetime.
This GivingTuesday, will you help spread us the word to let more people know about PC and the work PC Project is doing to advance treatments and find a cure? Our GivingTuesday theme this year is #MyPCDream. We’d like to flood social media with inspiring messages about the first thing each of us would do once a cure for PC is found. And if you are not on social media, no problem. We still encourage you to share your message with your family and friends and invite them to support PC patients.
Here is the gist:
- GivingTuesday is November 28 — please mark your calendar to remind yourself.
- Write a short message around this year’s theme: #MyPCDream (for an example, see the message below). Use this question as a prompt:
What is the first thing you would do after a cure for PC is found, and why is PC Project so important to you today?
- On November 28, post your message to as many social media sites as you can with an invitation to your friends to make a gift. Use the hashtag #MyPCDream and this donation link: https://bit.ly/give2pc
For those employed in the UK, use the link to JustGiving UK to support PC so that you can claim the 25% GiftAid with your donation.
- Please share your message by emailing email@example.com or taging @pachyonychia in your posts.
- An anonymous sponsor has agreed to match $2 for every $1 donated to PC Project for GivingTuesday.
Ta-da! That’s it. Not too hard, right?
If you have any questions about being a part of PC Project’s #MyPCDream campaign, please ask. Here are a few of the most common:
- “Can I still participate if I’m not on social media?”
Yes, you can! We recommend sending your message about your PC dream and why you support PC Project in an email to friends and family on the morning of November 28. And then send a short follow-up message that evening. Remember to use this donation link: https://bit.ly/give2pc
Or send your message to us! We’ll post it for you on our social media accounts.
- “Should I make a gift too?”
If you are able to make a gift, please do! A generous anonymous donor has agreed to double match all GivingTuesday gifts this year, making your gift worth three times as much! In addition, some people find it easier to ask their friends for a gift if they’ve made one themselves.
- “What if I don’t want people to know I have PC?”
We understand the stigma around PC, and PC Project is striving to change that. In your #MyPCDream message, you can say “Someone I care about has PC and my wish for them is….” If you’re having trouble finding words that feel right to you, please reach out. We’d be happy to help.
We are already getting messages from PC patients and will be sharing them as they come.
First, I’d wake up after a long, uninterrupted, and restful sleep. (It’s rare for me to sleep more than a few hours before the ache in my feet wakes me up.)
Then I’d go for a long and exhilarating run on the beach. (Running is nearly impossible on most days.)
I’d stand in the surf, feeling the water and sand on my feet. (It’s normally torture to get my feet wet. And wet feet on sand — forget about it!)
After the beach, I’d go home and take my dog to the park for the longest walk he’s ever been on. (I almost never get to walk him now, which breaks my heart because he LOVES walks.)
And finally, I’d stand in the shower for hours. Just. Because. I. Could.
That’s #MyPCDream, <Sal>. I don’t need to travel around the world, wear fancy clothes, or eat expensive meals to be happy. I just want to experience everyday life without constant pain. Without feeling like a burden to those I cherish and who love me.
Until that day, I know that PC Project has my back. And I have theirs.
With PC Project, I know my GivingTuesday donation is going to the things that matter most to PC patients like me:
Funding research into PC treatments via grants.
Connecting pharmaceutical partners with patients for clinical trials.
Maintaining the only PC patient genetic registry — free to join!
Providing extensive online resources and care tips for PC patients, parents, and families.
Organizing support groups for PC patients.
And so much more.
The worst thing about having PC is when there are things I can’t do with my friends. Like trick-or-treating.
This Halloween, I went trick-or-treating with the kids in my neighborhood. It was really fun at first. But I was in my wheelchair so I couldn’t keep up. They ran across the lawn to the next house but I had to go all the way down the walk to the street and then back up to the next house.
I fell too far behind and couldn’t keep up. I felt like I was going to cry so I just went home.
If there was a cure for PC, I would get it right away so I could do all the things my friends do. I wouldn’t have to sit on the side anymore. I could participate in gym class and play on the playground and go to the beach.
And I could do all of the hikes my family does without feeling like I’m slowing them down.
I just want to be like other kids.
PC Project is doing all kinds of things to help kids like me and other people with PC. PC Project helps doctors work on ways to treat PC. Someday PC Project will help scientists find a cure.
Until then I want everyone to know how much PC Project means to me and my family.
The Klein Family
Daughter with PC
We are reaching out for our annual ask to support the Pachyonychia Congenita (PC) Project on this Giving Tuesday. Our daughter Audrey carries this one-in-a-million spontaneous mutation of the keratin gene, which results in PC, an ultra-rare skin condition. PC Project helps PCers and fights for a cure. We are committed to this organization; Barbara spent years on the PC Project Board, where I now serve.
PC Project devotes most of its resources to patient support and scientific research—including supporting clinical trials by mobilizing the patient community, and partnering with industry and scientists to guide their efforts. This year, for the first time ever, PC Project completed a Research Agenda unique to this condition. Bringing together the best minds and practitioners on global PC research, we produced a document that will drive research toward new treatments and a cure.
PC Project also launched a first-of-its-kind Scientific Grants Program. This will complement federal and private funding by providing grants of up to $100,000 for PC research aligned with the Research Agenda.
We received multiple high-quality proposals and had a tough choice: do we stick within our budget and turn down a promising proposal, or do we fund that one extra grant that could possibly change everything?
The Board said yes and funded a third grant, one more than we were planning to. While it is a stretch, PCers like Audrey can’t afford to wait. There are no known cures or even approved medicines to treat PC. Building on last year’s success where PC received a special designation from the FDA, allowing advanced research on humans, now is the time to be ambitious.
Speaking of ambitious, that’s Audrey. She turns 11 next week and is still incredibly active, having made a travel soccer team that’s basically one grade above her. She plays hard and needs to be tough. She manages through the pain in her feet, knowing, like all PC’ers, she’ll pay for it after the game. As she continues to grow, we expect some difficult choices but remain hopeful that science will move as quickly as she does on the pitch.
Many of you have been incredibly generous in the past and we thank you. If we have not thanked you directly enough, we apologize for that. This is an emotional issue for us, not something we enjoy talking about. We’d much rather share pictures and stories of Audrey playing than discuss our anxieties or go down rabbit holes of what the future may hold.
We once again pledge to match your kindness with our own. We will match every dollar you contribute, and PC Project lets us track it. In addition, one anonymous donor will match all PC Project donations 2:1 this Giving Tuesday (and through the end of the year). So if you donate $1, we’ll match you, making it $2 and this donor will donate $4, making your total impact $6. Last year, thanks to our friends’ and family’s amazing generosity and kindness, we raised over $6,000, which we matched, resulting in over $36,000 to PC project, making this network one of the largest givers in the world on Giving Tuesday. Thank you from the bottom of our hearts.
Here is the link to donate:
And the link to PC Project for more information:
Thank you with love and kindness,
Aaron, Barbara, Mia and Audrey
PCer & PC Parent
I get a text from a friend saying she’s getting a group together to go out dancing that evening, would I like to join?
I feel up! Dancing with my besties sounds like so much fun!
But then I start to worry if my feet will hold out. So I don’t respond right away. And I start to feel down on myself.
I eventually text an excuse that I’m tired or having a hard day and can’t make it. “I’ll be there next time!” There’s an immediate feeling of relief as the worry dissipates. I’m slightly up again.
But then the guilt comes. I’m a bad friend. I’m unreliable. I’m not present for the people I love because of my PC pain. That’s when the emotional crash happens.
On top of the physical pain from PC, the emotional ups and downs PC causes me are EXHAUSTING.
That’s why it wasn’t hard at all for me to think of the first thing I’d do after a PC cure is found: I’d say yes to every invitation I got and go dancing with my friends! Heck, I’d be the one sending the text every Friday inviting people to go out with me!
#MyPCDream is a time when PC patients like me don’t have to count our steps and worry if we’ll be able to spend time with our friends and family.
And thanks to PC Project, we are getting closer every single day.
PC Project is the only organization in the world 100% focused on helping people with Pachyonychia Congenita, advancing PC treatments, and working to find a cure in our lifetime. In fact, PC Project helped provide patients for three different clinical trials this year!
PC Project is the best hope we have to make our PC dreams come true.
PCer & PC Parent
The first thing I will do once a cure is found is go running, play pickle ball, and then go out for dinner and dancing — all in the same day! Until then, #MyPCDream is to have a better care plan and effective treatments to help me make it through the day without crippling pain.
I know that PC Project is making strides every day, and that’s why I’m making a donation for #GivingTuesday. Will you join me and make a gift today? https://bit.ly/give2pc“
PC Project is working hard to make the dreams of every PC patient come true. But to do that, we need your help. Join us by sharing your PC dream and making a donation, you’ll help us reach more people, inspire hope for others living with PC, and help us get another step closer to a PC cure. Thank you!