breathe for PCD

Breathe for PCD Campaign

Breathe for PCD is one of many grassroots campaigns to further awareness and research opportunities for PCD.  The lungs design was created to be a reminder to keep a heartfelt focus on the daily and long-term goal.  LifeHealth.  


All proceeds will go directly to the PCD Foundation.  The hope is to raise money for PCD but to also spread the word on a rare disease that desperately needs attention.

* What began as a fundraiser, the Breathe for PCD campaign has exploded! There are currently over 1,000 Breathe for PCD products out there in the world spreading the word on PCD! When you get YOUR Breathe for PCD shirt, please share pictures on our Breathe for PCD facebook page or on Instagram (#breatheforpcd) to let us know how far Breathe for PCD has travelled!

  TO BUY YOUR BREATHE FOR PCD SHIRTS:

http://shop.spreadshirt.com/breatheforpcd

* THERE IS ALSO AN OPTION TO BUY THE BREATHE FOR PCD LUNGS SHIRT WITH THE SUN/HEART ON THE OPPOSITE SIDE FOR THOSE LIVING WITH SITUS INVERSUS! 

The designs for the t-shirts and the logo for the website were created by the amazing designer/illustrator, Tiffany Everett.  You can find her at: www.tiffanyeverett.com

Get your Breathe for PCD calendar here:

http://www.yearbox.com/calendarsforgood/breathe-for-pcd-2018-calendar/ These will only be available for the month of October in order to get in time for Christmas and the New Year! All proceeds will go directly to the PCD Foundation. $1 from each calendar sale will go to the tree planting program by the National Forest Foundation in which one tree will be planted for every dollar given!

NEW DESIGN!


PUNCH PCD IN THE FACE!

Check out this design inspired by a 9 year-old boy with PCD.  Read his story below!


Hi, my name is Evan and I am nine years old.  I have battled a rare disease called Primary Ciliary Dyskinesia (more commonly known as PCD) since I was seven years old.  Treatment after treatment, and med after med, the battle began.  Then came the day that would change it all.  One day, I was watching American Ninja Warrior on TV (The show is awesome!).  Up to the starting line came my new favorite competitor, Ryan Ripley, aka the CF Warrior.  (CF is a very similar disease to PCD).  He talked about how he started running every day and working out.  After a while, he started to drop some of his meds.  I thought maybe if I worked hard enough I would get the same outcome. So the next day, inspired by the CF Warrior, would be day one of "Operation Punch PCD in the Face".

(Our Baby. The reason for Breathe for PCD)

Within hours after birth, our perfect baby was sent to the NICU for pulmonary hypertension.  Once we settled in to the NICU nightmare, in our hearts and minds we believed that, once we got through this hell, the worry and pain would be over.  We were wrong.

At one month old, our baby was diagnosed with PCD.  Strangely, we are one of the lucky ones.  Most people do not find out until years later, after permanent damage has been done.  Besides the horror of the news that our baby had a lifelong, progressive disease, we soon were faced with the fact that there is no research on how best to treat our baby. 

Our daily regimen for preventative treatment is extremely time consuming and disruptive.  But the worst part is the uncertainty that what we are doing is helping him

When he is healthy, our preventative measures include use of an inhaler 3 times a day along with chest physical therapy.  We call it clapping.  We use a "clapping" tool across his chest and back to shake loose mucus with the hopes of making him cough it up.  He has a chronic cough, but when it seems as if he has a cold, we take him in to the doctor for a culture from the throat, so as to catch any infections as early as possible.  Some months we are in as often as 6-8 times; once or twice a month when doing well.  When he is sick, we give him saline via nebulizer 2 times a day to loosen the mucus.  We have been told that eventually his lungs will be colonized by bacteria resistant to drugs.  Many adults with PCD live with partial lung function and eventually require lung transplants. 

My baby with PCD got dealt a shitty card.    Being that this is a genetic disorder, however, if he was not born with PCD, he would have been a different human.  I could not have dreamed up a more perfect baby.  Already he has revealed himself to us.  Radiant.  Determined.  Adventurous. 

This is a battle that we will fight with him.  The generosity and support of friends, family, and empathetic strangers, helps us to breathe easier.