The purpose of this page is to update donors on the resolution of the CMTA donor data breach that was first communicated in March 2021. Transparency is a core value of our organization, and we are now able to share more details about this resolved issue as well as provide links to the Court documents: Temporary Restraining Order, Notice of Voluntary Dismissal, FAQ, and CMTA mission documents STAR & CMTA.

Data Breach Update

In December 2017, a former employee of our organization, Ms. Susan Ruediger, downloaded our entire donor database following her notice of resignation from the Charcot-Marie-Tooth Association (CMTA) and before her last day of employment in January 2018. In April 2018, Ms. Susan Ruediger and Mr. Pat Livney, former CEO of the CMTA, formed the CMT Research Foundation (CMTRF). Sometime thereafter, CMT Research Foundation began using portions of the database to solicit donations for CMT Research Foundation.

The Charcot-Marie-Tooth Association first became aware of this data breach in early 2021. Shortly after, we attempted to resolve the matter directly with Ms. Susan Ruediger and CMT Research Foundation but were unable to do so. Unfortunately, the CMTA was forced to take legal action, which was underwritten by the CMTA board of directors.

During the course of the investigation, Ms. Susan Ruediger and CMT Research Foundation acknowledged possession of the CMTA’s donor database information and that they used it to solicit donations for their organization. Ms. Susan Ruediger also acknowledged possession of other CMTA materials.

On March 29, 2021, a judge ruled in favor of the CMTA and ordered Ms. Susan Ruediger and CMTRF to return the donor database information. Following the court order, a forensics firm was hired to scrub CMTRF devices and platforms of the CMTA donor information and derivatives. The forensics firm also confirmed the return or deletion of all information that was given to third party vendors.

As of September 2021, the CMTA has confirmed through communication from the forensics firm and law firms that all donor information from the CMTA has been permanently removed from CMTRF computers and devices; and we have now notified the Court that the matter is resolved.

We greatly appreciate your patience, understanding and loyalty to the CMTA throughout this time — and we apologize for any concerns this may have caused you or your loved ones living with CMT. We also understand there has been some confusion in the community about the difference between our organization and CMTRF, and we are including some additional information about the CMTA and our mission on this page.

The CMTA remains focused on our mission to develop treatments and a cure for CMT, and to help improve the quality of life of everyone living with this disease. If you have any questions, please reach out to:

Gilles Bouchard
Board Chair

Amy Gray

Most Frequently Asked Questions

Q: Why did the CMTA take legal action against Susan Ruediger and the CMT Research Foundation for the data breach?

A: The CMTA had a legal and ethical obligation to protect our donors’ data and their privacy and to understand if and how that information had been used or exposed.

Q: How was the lawsuit (CMTA vs. Susan Ruediger, CMT Research Foundation) resolved?

A: On March 24, a Superior Court in Georgia granted the CMTA’s request for a temporary restraining order and preliminary injunction prohibiting Ms. Susan Ruediger or CMT Research Foundation from any further use of the donor database. The Court found that there was a substantial threat the CMTA would suffer irreparable injury if the injunction was not granted as well as there was a substantial likelihood that CMTA would prevail on the merits of the claim at trial.

After the March Order, the CMTA was able to confirm through communication with the forensics firm and attorneys that all CMTA donor data was returned and scrubbed from Susan Ruediger’s and CMT Research Foundation devices and platforms, including email accounts and social media accounts.

CMTA has now concluded that it has recovered the donor information taken by Ms. Susan Ruediger and used by the CMT Research Foundation which was its primary goal in bringing the lawsuit. Once CMTA achieved this, it dismissed the case without prejudice so that it could focus on its core mission to support the development of new drugs to treat CMT, to improve the quality of life for people with CMT, and, ultimately, to find a cure.

Q: How was the lawsuit (CMTA vs. Susan Ruediger, CMT Research Foundation) funded?

A: The legal fees were underwritten by the CMTA board of directors.

As the largest philanthropic funder of CMT Research worldwide, the CMTA remains committed to our financial obligations to the CMT community and our cause. A minimum of 90 cents of every dollar we spend will continue to go toward improving the quality of life, helping develop treatments and searching for a cure for those impacted by CMT.

Data Breach Resources