PLATINUM2023

C&S Patient Education Foundation

From Knowledge, Strength. Through Research, Hope.

aka Conquer Chiari   |   Wexford, PA   |  www.conquerchiari.org

Mission

The C&S Patient Education Foundation is dedicated to improving the experiences and outcomes of Chiari & syringomyelia patients by:

1. Providing accurate, up-to-date, and easy to understand information to patients so that they can take control of their health care and make intelligent, informed decisions

2. Raising awareness among family, friends, and the general public so that they can understand what patients are going through and are better able to provide support

3. Raising awareness among, and providing accurate, up-to-date information to, the medical community, so that errors in diagnosis and treatment are reduced

4. Sponsoring research to advance the understanding of these conditions and in the end Conquer Chiari

Ruling year info

2004

Executive Director

Richard Labuda

Main address

320 Osprey Ct

Wexford, PA 15090 USA

Show more contact info

EIN

20-0904691

NTEE code info

Fund Raising and/or Fund Distribution (H12)

Brain Disorders (H48)

Philanthropy / Charity / Voluntarism Promotion (General) (T50)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2023, 2022 and 2021.
Register now

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Chiari Malformation is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine, causing many symptoms and affecting more than 300,000 people in the US. Conquer Chiari, known formally as C&S Patient Education Foundation, is dedicated to improving the experiences and outcomes of Chiari and syringomyelia patients through education, awareness, and research.

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?

Quantitative Measures

One of the primary challenges of Chiari is the lack of objective tests and measures. While Chiari is defined by the degree of cerebellar tonsillar herniation, it has been shown that this is not a strong measure of symptom severity or eventual treatment outcome. Further complicating the picture is the fact that many Chiari symptoms can be vague and subjective. Developing objective, quantitative measure of Chiari and its symptoms would be a tremendous advance for patients.

Population(s) Served
Adults

Pathophysiology refers to the study of the physical manifestation of a disease in a person. In other words, what is wrong and why. Understanding the pathophysiology of Chiari should address important questions such as:

Are pediatric and adult Chiari the same or different?
Why are more women affected than men?
Why do symptoms vary so much from person to person?
What causes symptoms to start in the first place?
Why do people respond differently to treatment?

Understanding the pathophysiology of Chiari is critical to advancing the care that patients receive. Unfortunately, studying the pathophysiology of a disease involves work in basic science, which is expensive, takes a long time to develop, and is high risk.

Population(s) Served
Adults

Building an effective research program involves more than just funding individual projects. To be truly impactful for the Chiari community, top researchers – from a variety of disciplines - must be attracted to the field; easy access to patients and patient data must be established; and results must be disseminated effectively through conferences and journals.

Conquer Chiari is committed to doing more than just funding projects; we are committed to having a positive impact on patient outcomes and experiences. Therefore, we have committed a significant amount of resources to building a Chiari research environment, the centerpiece of which is the Conquer Chiari Research Center (CCRC).

The CCRC has quickly proven that our commitment to building a research infrastructure is paying dividends.

Population(s) Served
Adults

A lot of medical research involves basic science, which can take years and cost a tremendous amount of money.

The QoL research program is focused on addressing specific questions, in a timely fashion, which will directly improve patients’ daily experience. For example:

- How can Chiari kids participation in the educational experience be maximized?
- What therapies can be used to minimize residual symptoms after surgery?
- Can physical and/or cognitive therapy improve surgical recovery and outcomes?
- How prevalent are suicidal thoughts and tendencies among the Chiari population and how can those patients be helped?

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 Facebook followers

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of published articles from research funding

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Yearly total dollar amount funded to research

This metric is no longer tracked.
Totals By Year
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. Reduce the average time to an accurate diagnosis to less than 3 months from time of first symptoms.
2. Develop an effective, widely adopted, and minimally traumatic standard of care.
3. Minimize the impact that Chiari has on the quality of life of patients.
4. Understand the pathophysiology, natural history, and epidemiological characteristics of Chiari.

Conquer Chiari established the Conquer Chiari Research Center at the University of Akron (CCRC). The CCRC acts as the focal point for Chiari research and has quickly built a reputation as the premier Chiari research institution in the world.

The Conquer Chiari Research Center (CCRC) is the worlds first cross-disciplinary facility dedicated soley to Chiari research. The CCRC is staffed with experts in fields ranging from biomedical engineering to psychology, from molecular biology to exercise science. These dedicated scientists working hard to solve the mystery of Chiari through many avenues of investigation.

As of 2021 Conquer Chiari has funded more than $4 million in research. Conquer Chiari takes every dollar it receives in donations very seriously and has established a research agenda with a very structured program to achieve it.

Financials

C&S Patient Education Foundation
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights?
Learn more about GuideStar Pro.

Operations

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

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

C&S Patient Education Foundation

Board of directors
as of 02/03/2023
SOURCE: Self-reported by organization
Board chair

Richard Kushner

David Lee

Mark Tomczak

Charles O'Hanlon

Dr. Diane Mueller

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? Not applicable
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • 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? Not applicable
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Not applicable
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable