PCD KS FOUNDATION

PCD Foundation, Clear the Way!

aka The PCD Foundation   |   Rochester, NY   |  www.pcdfoundation.org

Mission

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

Ruling year info

2004

Executive Director

Michele Manion

Main address

61 Lake Meadow Dr

Rochester, NY 14612 USA

Show more contact info

EIN

20-0543474

NTEE code info

Alliance/Advocacy Organizations (G01)

Lung (G45)

Birth Defects (G20)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The Primary Ciliary Dyskinesia Foundation (PCDF) was established to address severe unmet needs in the PCD patient community that result in diminished quality of life, advanced respiratory disease and decreased lifespan. Specifically, the PCDF creates programs to accelerate quality research to address known deficits in PCD diagnosis and care, and facilitates the acceleration of research by providing a network of clinical centers where patients can access up-to-date education about their condition and focused data collection to help define and direct research priorities.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Research Support

The PCDF believes the best way to support the patient community is to ensure they have access to appropriate therapies and accurate information to inform care decisions, aid in family planning and improve quality of life. We believe that the information required to meet this goals will come from adequate and well‐controlled clinical trials. For this reason, we strive to be a ‘research‐focused’ organization.

At the current time, our direct investment is research is limited due to our resources, but we have leveraged our limited resources by partnering with researchers on grant applications, providing support for scientific meetings and travel awards for young investigators and participating in matching grant programs to amplify our funding.

Population(s) Served
Adults

The Patient Services program encompasses all aspects of patient community outreach, including educational materials and meetings, online and social media outreach, website maintenance, community fundraising and volunteer management. Additionally, Patient Services receives and routes incoming patient inquiries and provides referrals to clinical and/or social services specialists.

Working with the Clinical Centers program, Patient Services organizes and hosts ‘Clinical Center Awareness and Regional Education’ (CARE) Days in conjunction with our site visits to introduce local patients to their PCD center and reinforce the value of expert care for PCD.

Population(s) Served
Adults

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of new proposals or guiding principles developed

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth

Related Program

Research Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Published Genetic Disorders of Mucociliary Clearance Consortium. Diagnosis, Monitoring, and Treatment of Primary Ciliary Dyskinesia: PCD Foundation Consensus in Pediatric Pulmonology

Number of people on the organization's email list

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Related Program

Research Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Related Program

Research Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

1. The primary goal of the PCD Foundation is to accelerate access to medical research to develop better therapies and cures to improve the quality of life and health of those affected by primary ciliary dyskinesia.
2. The PCDF believes affected individuals and their families are full partners in the research process and strives, through educational initiatives, advocacy and awareness activities, to empower affected individuals and families to be their own best advocates.

The Path to Clinical Trials

The Path to Clinical Trials (PTCT) is the main focus of our Research Support Program. The PTCT consists of two critical infrastructure components needed to support clinical trial participation in PCD:

1. PCDF Clinical and Research Centers Network PCD‐CRCN or just CRCN (list of sites attached) The PCDF CRNC is modeled after the highly successful Cystic Fibrosis Foundation Care Centers. Each multi‐disciplinary site is required to meet stringent criteria for the diagnosis of PCD and to follow PCDF Consensus guidelines published in Pediatric Pulmonology in 2015 (attached). The sites undergo an accreditation visit and are evaluated by PCDF personnel and by clinical site reviewers. The CRNC currently has 29 sites in various stages of accreditation.

2. North American PCD Registry (NAPCDR)
Our primary focus in the immediate terms is funding the NAPCDR. The NAPCDR is modeled after the Cystic Fibrosis Registry, with the goal of collecting reliable core data from our clinical sites. Additionally, we hope to incorporate a patient‐report component to supplement and inform the core clinical data. The need for reliable clinical data on PCD is critical and finding resources to support the development of the NAPCDR is a top priority.

'PCD on the Move' Annual Scientific Conference

Our annual scientific conference is another component of our Research Support program. This meeting brings together top PCD experts from around the world to discuss cutting edge PCD research. It also serves as a training meeting for new investigators and clinicians.

ATS/PCDF Partner Grant

The PCDF partners with the American Thoracic Society's (ATS) Partner Grant program to provide research grants to meritorious applications received by the ATS.

Program Area 2: Patient Services

The Patient Services program encompasses all aspects of patient community outreach, including educational materials and meetings, online and social media outreach, website maintenance, community fundraising and volunteer management. Additionally, Patient Services receives and routes incoming patient inquiries and provides referrals to clinical and/or social services specialists.

Working with the Clinical Centers program, Patient Services organizes and hosts 'Clinical Center Awareness and Regional Education' (CARE) Days in conjunction with our site visits to introduce local patients to their PCD center and reinforce the value of expert care for PCD.

Working with internationally-recognized experts in PCD who comprise our medical and scientific advisory council (MSAC), we assess needs and prioritize research goals and initiatives. We established, maintain and accredit a growing network of expert centers (PCDF Clinical and Research Centers Network--CRCN) that partner with us to identify gaps in knowledge and care that can be addressed by expert consensus or by research. Our PCDF CRCN sites serve not only as the focal point for continuous two-way feedback with the PCDF, they will also be authorized to input and access high-quality clinical data, bioinformatics and patient reported outcomes through a PCDF-sponsored registry program currently in development. Finally, we facilitate interactive communication with our patient community through on-line support and education sites and by in-person family educational events called PCD CARE (Clinical centers awareness and regional education) Days.

We have established a North American clinical and research network comprised of top academic and pulmonary research sites in the US and Canada and created an evaluation and accreditation system to ensure quality control. Our high-quality network is recognized by US News & World Report, which factors the presence of a PCDF accreditation into their annual scoring of US pediatric pulmonary hospitals. We have sponsored major scientific conferences since 2002 and collaborate with researchers and PCD patient advocacy groups internationally. We partner with the American Thoracic Society (ATS) on PCD-specific grants. We host an annual scientific conference that has become an international and have published PCD Consensus Statement for distribution to non-expert clinicians treating patients with PCD. We maintain an educational website for patients and provide online support for the community.

Financials

PCD KS FOUNDATION
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Operations

The people, governance practices, and partners that make the organization tick.

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PCD KS FOUNDATION

Board of directors
as of 02/22/2022
SOURCE: Self-reported by organization
Board co-chair

Amy Kovler


Board co-chair

Billy Anton

Amy Kovler

Lynn Ehrne

Michele Manion

Gary Joyner

Billy Anton

Tori Eastvold

Carrie Willis

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 4/21/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

We do not display disability information for organizations with fewer than 15 staff.