This year the PCD Foundation is celebrating it's 20th Anniversary. To help celebrate everything the PCD Foundation has done over the past 20 years you can donate to help further the foundation's mission. This fundraiser is part of Running On Air's 8th annual Move 4 A Cure virtual race which benefits the PCD Foundation. Even though the race doesn't happen until October, which is PCD Awareness month, you can help to raise money and awareness now by signing up to be a Fundraiser or by making a donation..
From the Foundation's website:
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 15 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.
