Clear the Way supporting PCD Foundation
PCD Foundation

About the Cause

Our Work

The PCD Foundation was founded by a parent, Michele Manion, and a patient, Lynn Ehrne, in 2001, and is governed by a board of directors. The organization was incorporated in 2002 in the State of Minnesota and received federal tax‐ exempt designation in 2004. We rely on fundraising, grants and corporate money donations to fund operations. The Primary Ciliary Dyskinesia Foundation (‘PCDF’) is a not-for-profit 501(c)(3) patient advocacy foundation for individuals with inherited ciliary disorders and their caregivers.

The primary purpose for starting the PCDF was to address severe unmet needs in the PCD patient community, including: diagnostic challenges, lack of evidence to support therapies, inadequate demographic information and paucity of data related to the natural history of this disorder. Our programs reflect our efforts to create an infrastructure and processes to address these unmet needs.

In 2002 the PCDF partnered with the University of North Carolina, Chapel Hill (under the leadership of Dr.’s Michael Knowles and Margaret Leigh) on a five‐year grant to establish a clinical research network for PCD and related disorders. This network, the Genetic Disorders of Mucociliary Clearance Consortium (GDMCC), has now been funded for 20 years and the multi‐center model created by the GDMCC formed the basis for the growth of the PCDF Clinical and Research Network Centers (PCDF-CRNC) program.

Mission

To improve the quality of life of those affected by PCD and to develop the means to find a cure.

Vision

As a patient-focused organization, our goal is to provide the leadership and resources needed to support increased research, accelerated diagnosis, improved health and, ultimately, a cure for primary ciliary dyskinesia. Overall, our goals are to:

The PCD Foundation envisions a world free from illness and early death due to primary ciliary dyskinesia (PCD), and in order to carry out that vision, we strive to do the following by 1) improving diagnosis, quality of life and prognosis through research, 2) educating & supporting patient, scientific, and medical communities and 3) raising awareness of PCD.

How Your Support Makes a Difference


Since 2002, the PCD Foundation has been clearing the way for families with primary ciliary dyskinesia (PCD).

With your support, we have been able to further our mission of finding a cure for PCD. Your donation dollars have been used to:

•  Create a PCD Foundation Clinical and Research Centers Network (PCDF CRCN) for expert PCD diagnosis & care

•   Develop a PCD Foundation Registry to collect high-quality clinical data--a critical tool for accelerating research.

•   Partner with the Genetic Disorders of Mucociliary Clearance Consortium (GDMCC), an NIH-funded research consortium of top North American PCD experts, for an additional five-year PCD research project grant.

•   Collaborate with international colleagues and PCD communities to help amplify the work being done in PCD around the world.

•    Sponsor our fifth international ‘PCD on the Move’ scientific meeting devoted to PCD and related conditions.

•    Strengthen strategic partnerships with the American Thoracic Society, the NIH/RDCRN Coalition of Patient Advocacy Groups, and our international research and patient community partners.

•    Establish patient advisory committees to ensure the patient voice is front and center in all our activities.

It is a privilege to be in the fight to find a cure for PCD with our incredible patient community and supporters.


Together, we have taken this rare disease from relative obscurity to international awareness. This is no small feat and it is thanks to the support of people like you. 
As Bob Beall, former CEO of the Cystic Fibrosis Foundation says, ‘money buys research, research saves lives.’ Every donation makes a difference. Thank you for your commitment to support the efforts of the PCD Foundation in our mission of improving the lives of families affected by PCD.





This year has been a struggle for all of us. As we navigate the same storm in different boats, we continue to support one another. All our 2020 in-person events have been canceled due to COVID-19, and we have been searching for the best way to connect. We hope this 'Clear the Way' campaign will allow you to stay connected with the PCD Foundation and continue to support and engage with us, along with your network of family and friends. You can register here to support the PCD Foundation in several ways: by donating, by registering to host a fundraising page, or by organizing a virtual event of your own. 

Click 'Join Us' to create your own fundraising page to share out to family and friends. From your personal page you can host your own personalized event, whether it is in person or virtual.