Unmask the Faces of PCD
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It’s heartbreaking to be told that your child will wake up every single day with lung infections, severe sinus distress and earaches. It’s devastating to learn that eventually these chronic infections will lead to hearing loss, early disability and could ultimately result in such severe lung damage that lung transplant will be the only option to prevent early death. What if you only found out about this condition AFTER serious lung damage had already occurred? This is the reality for families with primary ciliary dyskinesia (PCD).

People with rare, unknown disorders like PCD live a life in the shadows, frequently hidden from the public and from the medical community and ‘masked’ by lack of awareness. Often, they face enormous challenges every day and sources of support are limited or non-existent.  In PCD, delayed or missed diagnosis means that more than 25,000 people are on a fast track to severe lung disease. The PCD Foundation is committed to ‘unmasking’ the faces of PCD and providing hope and help for those affected by raising awareness and supporting research.

With your help, we will ‘Unmask the Faces’ of PCD.

Our three goals for this mission critical campaign are to:

  • Raise funds to ensure proper diagnosis and treatment for all PCD patients now and in the future (See Path to Clinical Trials)
  • Improve awareness about the realities of PCD
  • Ensure that individuals with PCD have access to desperately needed research and support services

This initiative will serve as a foundation for building stronger relationships with clinicians, patients and provide hope for those affected by this under-reported disorder. We are on the cusp of some astounding PCD-related discoveries.  What we learn in PCD can potentially provide important information about more common respiratory diseases like chronic obstructive pulmonary disease (COPD--a leading cause of death in the US), birth defects like heterotaxy and congenital heart disease , as well as direct links to other ciliopathies including polycystic kidney disease (PKD--affects 500,000 in the US).

It’s an exciting time to join us in making a difference! Help us ‘Unmask the Faces of PCD’ – your child’s lungs may depend on it.

Here are some ideas to get started! 

  • Tell your personal story
  • Lend your time & talents
  • Get your company involved (team building, corporate match)
  • Get the kids to make a really cool mask! This e-mail address is being protected from spambots. You need JavaScript enabled to view it the pics and we'll post them online. Monthly winners! :)
  • Get your child’s school involved (Maybe have a 'Make a Mask' Day?)
  • Organize a walk or a run
  • Do something you like to do: comedy/bingo night, live/silent auction, bike ride, chari-tea, etc.
  • Make a donation
  • Participate In a clinical trial
  • Become an advocate (letter writing campaigns, talk to government officials, be the local PCD conduit for patients, community, media, etc.)
  • Inspire others to help
  • Email or social media campaigns

Contact us to learn more.