June 2020 – PC Awareness Month

How will you join the PC community in sharing information about PC with family, friends and others for June PC Awareness Month?

Submitted Art Work

Kaelyn, Elk Grove, Illinois USA – Not all heros wear capes

Jack, PC Project Board Chair, California USA – Jack has been a long time donor, supporter and advocate for PC Project. He is always donating what he can of his time and funds. When the website was updated in 2013, he was one of the first patients to agree to share his story on the PC website. He is the master mind behind all of PC Project’s campaigns.

“Recently a friend asked why I give so much of my time, energy and treasure to PC Project.

Two reasons:

First, because my feet hurt. A lot. For those of you with PC, you know my pain, because it’s your pain. For those of you without PC, thank your lucky stars. The best way I can describe it is this: Imagine your socks are full of shards of broken glass and there’s nothing you can do but stand and walk on that glass every step of the day.

That PC pain never goes away. And while you’re off your feet, you’re dealing with the aftermath of having walked on that glass. It’s awful.

Second, I give to PC Project because this organization NEEDS us. There is little funding of medical research for orphan diseases because it’s expensive and the profit potential for drug companies is limited.

People like us fall through the cracks of the system. We suffer from chronic pain because it just doesn’t make financial sense for pharma companies to find a cure for a disease that impacts so few people. If they only knew what it felt like!

Because of Mary Schwartz, founder of PC Project and one of my personal heroes, PC Project has engaged the best scientific minds in the world to pursue a treatment and cure for PC.

The path to that cure includes research that can lead to drug therapies, which then prompt clinical trials, which in turn will lead to a cure.

So, by supporting PC Project, I help achieve three important goals:

  • Expand the powerful International PC Research Registry
  • Reach potentially thousands of other people who suffer from PC
  • Fund more clinical trials in pursuit of effective treatments and a cure

Without progress toward an effective treatment or cure for Pachyonychia Congenita, I and so many countless others will suffer the chronic, unrelenting pain of PC for the rest of our lives.

Here’s the bottom line, my friends…. PC Project gives me hope and keeps my dream alive to one day be able to stand and walk without excruciating pain. It’s that simple.

P.S. And thanks to one of PC Project’s biggest supporters, every dollar that is donated during PC Awareness Month will be matched 2:1. That means every dollar you donate is worth $3 to PC Project! Donate here.

Greg, Huntington Beach, California USA – “This boy, Wyatt, is a friend of ours who I have played harmonica for because he likes it and we like him. The photos are numbered to show the progress of the artwork.
We and his family all look forward to your successful research results and the ability to help these patients. Thank you. The following message and photos were posted on Facebook and NextDoor.
Sidewalk chalk art on my driveway. This little boy has a presently incurable condition called Pachyonychia Congenita (PC for short).  He is one of the most energetic, sweet, happy little kids I’ve ever met. He erroneously calls me “gammpa” because he heard our family call me that. If you look into this boy’s condition a bit, you’ll discover that he has painful hands and feet at times among other problems associated with the condition. Few people worldwide have this condition so little is known or done about it but research IS going on and I support that effort wholeheartedly. This month is PC Research awareness month. To bring attention to the condition and those who suffer with it the proponents of that research have put out a call for sidewalk art to support their effort. This is my contribution. It comes from our love for this little pal who someday will play HIS harmonica for US.

Block Family Shoefield, Wisconsin USA – Shared how they have to plan breaks during family outings. The photo below shows they took a break during a mountain bike ride so their daughter, Allison can cool her PC feet at a waterfall. Read Allison’s PC Story.

Tony (age 12) West Yorkshire, England United Kingdom – Our sidewalk was recently dug up and is in no state to doodle on, so we made a window board instead. Tony’s mother, Kerry also made a PC awareness video.

Hickman Children, Woverhampton, England, United Kingdom – With rain persisting at the moment in England, the Hickman children made the following sign “The pain of PC on the feet is real.”

Alicia, New Richland, Minnesota USA – The strongest people I know have PC. They don’t let anything hold them back or stop them as they take each painful step with calculation to achieve their goals. Here is a picture of my husband Jack and daughter Ella, who both have PC K16, hiking in the mountains. Thank you for all you do for the people I love the most!

Michael, Sewel, New Jersey USA – Shared his story about living with PC on social media and the PC Website.

David, Cottonwood Heights, Utah USA – HOPE

Baker Family, Swansea, Wales UK – Thank you PC Project!

PC Sidewalk Challenge

June is Pachyonychia Congenita Awareness Month. It’s the one month every year where we join together as a community to raise awareness of PC and share our global fight for effective treatments and a cure for this painful condition.

This year we are holding the first ever “PC Sidewalk Challenge” — a worldwide movement to create sidewalk art in your community, expand awareness of Pachyonychia Congenita, and spotlight PC Project’s ongoing work to support people with PC and find a cure.

Although sidewalk art is new to many countries, it has a long tradition in Europe and is thought to have originated in Italy during the 16th century.

Here are four easy steps to create your own PC Sidewalk Challenge masterpiece!

  • Step 1 – Choose an image you want to create. Maybe it illustrates what PC means to you … or maybe it’s an inspirational image and a few words about fighting for a cure.
  • Step 2 – Draw the basic outline of your design with white chalk.
  • Step 3 – Color in the design using lighter and darker colors to create shadows and depth to your drawing.
  • Step 4 – Try painting your art with a water-soaked brush to give it staying power. As you wet the chalk, your colors will darken and come to life!

Remember to snap some photos of your creation and post your pics and messages on social media with the hashtag #PCSidewalkChallenge and tag @pachyonychia. If you’re not on social media, you can still e-mail us your pics and messages at: info@pachyonychia.org

Creating sidewalk art that honors those living with PC is a small gesture that, if we ALL do it, can have a big impact.

Sidewalk Art Created by Kelsie Evans, Herriman, Utah.
Sidewalk art created by Kelsie Evans, Herriman, Utah.

Below is the kick-off email sent June 1st from a mother and wife of PCers.

Dear Friends,

As mom to Wyatt, a little boy with Pachyonychia Congenita, I have a special relationship with the month of June … otherwise known as PC Awareness Month.
That’s because this disease has been a constant challenge for us since he was diagnosed at age 1. No matter what month it is, I’m always aware of PC….

 I’m aware of PC when I care for my son’s painful, infected nails. I’m aware when I’m consoling my husband, Jason, who also has PC, after a rough day on his feet. I’m aware when he struggles to get out of bed on his worst days. I’m aware when I worry about when my son’s feet will become as bad as his father’s. And I’m especially aware when I remember there is still no cure for PC.

That’s why PC Project is so important. It’s the only organization in the world that is 100% focused on helping people with Pachyonychia Congenita and working to find a cure in our lifetime. PC Project helped me learn how to deal with my son’s nails and found the PC mutation for our family.

This month, we honor their important work and move the needle on progress.

Today we’re kicking off the PC Sidewalk Challenge — a global movement to create sidewalk art in your community and help expand awareness of Pachyonychia Congenita.

This is an initiative we can all take part in. It’s easy….

  1. Create your sidewalk art
  2. Include a message of encouragement for people with PC
  3. Snap some photos of your creation and email to info@pachyonychia.org
  4. Post your pics and messages to Instagram, Facebook and Twitter with the hashtag #PCSidewalkChallenge and tag @pachyonychia

(If you’re not on social media, you can still e-mail us your pics and messages at: info@pachyonychia.org)

Throughout the month of June, PC Project staff and volunteers will boost your posts and messages of encouragement plus share stories about living with PC. Together, we’ll show that we are united in our commitment and still fighting for a cure.

Wyatt, my son is the most amazing gift I could have asked for. The greatest thing I can give him is my dedication to expanding awareness of PC, reducing stigma, and finding a cure in his lifetime. Creating sidewalk art this month that honors those with PC is a small gesture that, if we ALL do it, can have a big impact. Personally, I’m hoping Banksy gets involved! Can you imagine?

Our actions will help the world “see” my son and others with PC, make it a more accepting place, and keep us moving toward a time when we forever banish the pain and stigma that come with having Pachyonychia Congenita.

Ready to get started? Be the first to post your #PCSidewalkChallenge art on social media!

There’ll be more to do in the coming days. Stay tuned, and thanks in advance for helping us make this year’s PC Awareness Month the most impactful ever!

Jennifer
Mom of Wyatt
Fellow PC Project Supporter

 

 

 

 

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