DUPUYTREN RESEARCH GROUP

A Future Without Dupuytren Disease.

aka DUPUYREN FOUNDATION   |   West Palm Beach, FL   |  www.dupuytrens.org

Mission

VISION STATEMENT
A future without Dupuytren disease.
MISSION STATEMENT
New research for an old problem; leading the way to end Dupuytren disease in our lifetime.
CORE VALUES
Our core question is “What is the best we can do for families affected by Dupuytren disease?".
Our core belief is that patients and families affected by Dupuytren related conditions hold the key to finding a cure.
Our core mandate is to pioneer research to cure Dupuytren disease and related conditions.
Our core team is patients, scientists, and physicians working together on innovative research to find the cause and the cure of this disease.

Ruling year info

2009

Executive Director

Dr. Charles Eaton

Main address

1850 Forest Hill Blvd Suite #201

West Palm Beach, FL 33406 USA

Show more contact info

EIN

26-3886958

NTEE code info

Specifically Named Diseases (G80)

Research Institutes and/or Public Policy Analysis (E05)

Birth Defects, Genetic Diseases Research (H20)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

What is Dupuytren disease? Dupuytren disease is the most common crippling hand condition that people have never heard of. It affects at least ten million Americans, making their fingers permanently bent, sometimes severely. Why isn't it more commonly known? Dupuytren contracture makes the fingers bent as if relaxed, not obvious unless the person tries to open their hand. It progresses slowly, usually doesn't hurt, and mostly affects seniors. It's often mistaken for arthritis or tendinitis.
Why is it important? Bent fingers are only part of the picture. Dupuytren disease is a systemic problem. It can affect the hands (Dupuytren contracture, Garrod knuckle pads) and the feet (Ledderhose Disease). Developing one of these increases risk of developing others. It is a serious health issue. People with Dupuytren contracture have a greater risk for cardiovascular disease, several types of cancer, and early death – for reasons unknown. There is no prevention and no cure.

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?

A Future Without Dupuytren Disease

Our core program is the International Dupuytren Data Bank (IDDB) a research project designed to develop a Dupuytren blood test - a biomarker. The first phase of the project, a Dupuytren patient survey, has been funded and completed. We are seeking funds for the next phase of this project.

Population(s) Served
Adults
Seniors

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 participants who will benefit from specific disease related blood testing

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

Adults

Related Program

A Future Without Dupuytren Disease

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Blood testing began in 2020. Will continue in 2021.

Number of patients to be tested.

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

Age groups, Health

Related Program

A Future Without Dupuytren Disease

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

Due to the high cost of testing, we will start with small batches.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

The Dupuytren Foundation is seeking funding for research to find a cure for Dupuytren disease, a common crippling hand condition. We are the largest global advocate for this neglected condition. Our research will provide innovative solutions to problems which have blocked progress in Dupuytren research for generations. We have assembled the right team, the right technologies, directly engaged the Dupuytren patient community for collaboration.

The first stage of online surveys launched and currently has over 3700 enrollees. The second stage will be blood collections. For cost-efficiency, the study will be will be rolled out in steps. It will begin with a small pilot study of all three stages. Larger versions will follow, guided and refined by cumulative experience. Primary use of donor funds includes laboratory costs, blood collection and storage fees, and costs associated with other nonprofit partner organizations.

Dr. Charles Eaton is the Executive Director & BOD President of the Dupuytren Foundation which he founded in 2008. Dr. Eaton is a board certified hand surgeon & world renowned expert on Dupuytren Disease. (DD) His extensive experience includes introducing a minimally invasive procedure to the United States in 2003 which is now considered to be the preferred treatment for advanced DD. Dr. Eaton serves on advisory boards of the International, British, & Canadian Dupuytren societies.  In 2012 Dr. Eaton closed his clinical practice & is now devoted to the mission of the Dupuytren Foundation-to find a cure for DD as rapidly & efficiently as possible.

The first stage of online surveys launched and currently has over 3700 enrollees. As funding becomes available, we can begin the second stage, collecting blood from enrollees, as we work toward a cure.

Financials

DUPUYTREN RESEARCH GROUP
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Operations

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

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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DUPUYTREN RESEARCH GROUP

Board of directors
as of 4/7/2021
SOURCE: Self-reported by organization
Board chair

Dr. Charles Eaton

Dupuytren Research Group

Term: 2008 -

Stuart Landow

Dupuytren Research Group

Keith Raskin

Dupuytren Research Group

Peter Geimer

Dupuytren Research Group

Laura Jost

Dupuytren Research Group

Charles Eaton

Dupuytren Research Group

Gary Pess

Dupuytren Research Group

Tom Hardart

Dupuytren Research Group

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 ? 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? 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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 1/27/2021,

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
Male

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 01/27/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.