DUPUYTREN RESEARCH GROUP
A Future Without Dupuytren Disease.
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
2009
Executive Director
Dr. Charles Eaton
Main address
1850 Forest Hill Blvd Suite #201
West Palm Beach, FL 33406 USA
EIN
26-3886958
NTEE code
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
Programs and results
What we aim to solve
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
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.
Where we work
External reviews
Photos
Our results
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.
Number of patients to be tested.
This metric is no longer tracked.Totals By Year
Population(s) Served
Health, Older adults, Seniors
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. We are still testing blood drawn in first round.
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
The first stage of online surveys launched and currently has over 4000 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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
The first stage of online surveys launched and currently has over 4000 enrollees. As funding becomes available, we can begin the second stage, collecting blood from enrollees, as we work toward a cure.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To inform the development of new programs/projects, To strengthen relationships with the people we serve
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We act on the feedback we receive, We ask the people who gave us feedback how well they think we responded
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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DUPUYTREN RESEARCH GROUP
Board of directorsas of 09/06/2023
Dr. Charles Eaton
Dupuytren Research Group
Term: 2008 -
Stuart Landow
Dupuytren Research Group
Keith Raskin
Dupuytren Research Group
Peter Geimer
Dupuytren Research Group
Laura Holmes Jost
Dupuytren Research Group
Charles Eaton
Dupuytren Research Group
Gary Pess
Dupuytren Research Group
Tom Hardart
Dupuytren Research Group
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
No data
Gender identity
No data
No data
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 01/27/2021GuideStar 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
- 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.
- 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.
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