PLATINUM2024

CMT Research Foundation Inc

One Single Focus: Deliver Treatments for CMT

aka Charcot-Marie-Tooth Research Foundation   |   ATLANTA, GA   |  www.cmtrf.org

Mission

The CMT Research Foundation funds high-impact, translational research which will accelerate the discovery, development and clinical application of treatments and cures for CMT.

Notes from the nonprofit

We are still a very small organization with just 6 full time employees. We are seeking to follow all guidelines and implement as many good practices as possible but also have the constraint of very limited time and resources.

Ruling year info

2018

CEO

Cleary Simpson

Chairman of the Board

Patrick Livney

Main address

4062 PEACHTREE ROAD NE SUITE A209

ATLANTA, GA 30319 USA

Show more contact info

EIN

82-5476655

NTEE code info

Fund Raising and/or Fund Distribution (H12)

Nerve, Muscle and Bone Diseases (G50)

Alliance/Advocacy Organizations (G01)

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

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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

We support the most promising and efficient Charcot-Marie-Tooth research aimed only toward development of treatments by building strategic alliances with academic and industry stakeholders.
Our goal is to forge partnerships with pharmaceutical companies to include a revenue share program which will in turn be reinvested into translational research for all types of CMT through treatments and cures.
Research proposals are carefully vetted by the CMTRF’s Scientific Advisory Board. They measure each proposal based on the excellence of the investigator, the work plan and the environment, as well as its ability to be translated into treatments for people with CMT.
Because we have a sense of urgency to deliver important scientific breakthroughs, proposals are quickly vetted while assuring a comprehensive and optimal approach.

Population(s) Served
People with physical disabilities

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 organizational partners

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

People with physical disabilities, Chronically ill people

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of research studies funded

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

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Research projects funded in academia and industry

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 CMT Research Foundation is a patient-led, non-profit focused solely on delivering treatments and cures for Charcot-Marie-Tooth disease. CMT affects one in 2,500 people (about the same prevalence as multiple sclerosis), including 150,000 Americans and more than 3 million people around the world.

We have one single mission: to raise funds to invest in science that will lead to treatments and cures for CMT. Our impact goes beyond simply making investments. We identify key problems or gaps in progress to a cure, then aggressively find partners to attack the problems. We introduce CMT to the greater drug development community, something that has rapidly increased the number of experts working to solve the disease.

We fund projects with the highest likelihood of leading to clinical trials and approved treatments in the near term. All investments are gated, meaning projects need to achieve milestones defined for each phase of work before receiving funding for the next. Every contract includes a return on the CMT Research Foundations initial investment which is then reinvested in new projects.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • 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 look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don’t have the right technology to collect and aggregate feedback efficiently, It is difficult to find the ongoing funding to support feedback collection, It is difficult to identify actionable feedback

Financials

CMT Research Foundation Inc
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Operations

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

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lock

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

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

CMT Research Foundation Inc

Board of directors
as of 05/03/2024
SOURCE: Self-reported by organization
Board chair

Patrick Livney

Loan EcoSystems Online

Term: 2018 - 2024

Paul August

ReviR Therapeutics

Adam Kauffman

STORD

Cleary Simpson

CMT Research Foundation

Susan Ruediger

CMT Research Foundation

Joe Mulvey

Ealaín Technology Solutions LLC

Peter deSilva

Susan Canavari

Maximiliano Barrientos

EntreConsultas.AI

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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 5/3/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

No data

The organization's co-leader identifies as:

Disability status
Person with a disability

Race & ethnicity

No data

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 05/03/2024

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 employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.