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.

Ruling year info

2018

CEO

Susan Ruediger

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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Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Charcot-Marie-Tooth disease is the most common genetic neuromuscular disease. CMT affects 1 in 2500 people, roughly 2.8 million people globally. CMT is genetic peripheral neuropathy, & causes progressively mild to severe disability. There are no treatments or cures for CMT. The CMT Research Foundation has one single focus: deliver treatments for CMT. We are the steward of research from mid-stage discovery to clinical trials and commercialization. We are experts in CMT & have a robust interaction with Key Opinion Leaders (KOL), industry leaders, & the patient and donor communities. The CMT Research Foundation has a strong Scientific Advisory Board and financial resources dedicated to research which can quickly accelerate the current knowledge into the development of treatments and cures for CMT. We are excited by the advances in genetics, cell technology and research into the causes of CMT. Although we understand the challenges before us, we see a promising future.

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
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 was created by two patients who have over 20 years of experience advancing CMT research and drug development. Working with a network of respected scientists and industry professionals, the foundation will accelerate treatments and a cure for CMT. With the support of families who are impacted by the disease, CMTRF is dedicated to ensuring that no future generations suffer from CMT.

The CMT Research Foundation builds upon the current body of knowledge and funds high-impact research which has the potential to be developed into treatments for CMT. We fund academic labs, projects at industry partners, all with the goal of delivering scientific breakthroughs to lead to the delivery of treatments for CMT.

Because there are no treatments for CMT, we will not rest until we’ve achieved victory—a world in which everyone with CMT gets the necessary treatment and lives without disability.

We pursue the most innovative translational research and ensure that it receives proper funding.
Our Scientific Advisory Board is continually seeking and evaluating proposals to find the most urgent projects that show the most promise and will advance the development of treatments. We are relentless in pursuing those ideas and technologies that can lead to clinical trials and treatments for patients.

We identify the gaps in research and create strategies to find solutions.
With our vast network of scientific expertise, we have a deep understanding of the state of CMT research and what critical questions are unanswered. We assemble the leaders in each field to address the gaps, then we fund their work.

We are transparent.
We are transparent about our funding and the status of our projects. Investors will know how their donations are being deployed and the results they produce.

We build strategic partnerships.
Delivering treatments for CMT is expensive and one organization cannot fully fund the required research. We make smart investment decisions and work collaboratively with government, industry and other patient-led organizations.

We encourage dialogue and collaboration among the scientific community.
Working with key researchers and other organizations on the path to a treatment will lead to stronger and faster outcomes.

We have great hope, which is grounded in reality.
We are excited by the advances in genetics, cell technology and research into the causes of CMT. Although we understand the many challenges before us, we see a promising future for everyone living with CMT.

The CMTRF has a broad strategy to identify and fund novel research projects to address the many unanswered questions needed to deliver treatments for CMT. Through our network of Key Opinion Leaders and industry contacts, the CMTRF identifies urgent scientific questions and identifies pathways to solve the complex problems in CMT. The CMT Research Foundation has a strong Scientific Advisory Board to curate research proposals from academia and industry, prioritizing the most transformative, high-impact projects, leading to critical scientific breakthroughs.

We are able to provide substantial funding to a myriad of research projects that will serve as a catalyst to drive industry toward CMT, lowering the barriers that exist in drug development today.

The CMT Research Foundation brings new money and attention to CMT, attracting seasoned CMT researchers as well as those new to the field to work together to develop treatments for CMT. In just two years, the CMT Research Foundation has brought nearly $3 million to CMT research, attracting new investigators, institutions and pharma companies to the CMT field. Additionally, our funding allowed stalwarts in CMT research to continue their critical work. In 2020 alone, we committed $1.3 million to four new research projects for CMT. Three of these projects funded veterans in CMT research, leveraging their expertise to advance drug development, while one project brought modern technology to CMT to apply past successes to our disease.

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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CMT Research Foundation Inc

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

Patrick Livney

Loan EcoSystems Online

Term: 2018 - 2021

Paul August

Icagen

Jeff Ellman

Jones Day

Adam Kauffman

Pin Drop

Michelle Moon

Vancouver Clinic

Cleary Simpson

Consultant

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 4/15/2021

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
Disability status
Person with a disability

The organization's co-leader identifies as:

Gender identity
Male

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

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