Who We Are

Meet the people committed to ending CMT

There is a major sense of urgency driving every decision we make. Every dollar is put to optimal use. We are not wasting any time.

Patrick Livney

Founder and Chairman of the Board of Directors

CMTRF: Driven to Deliver

The CMT Research Foundation was founded by Susan Ruediger and Patrick Livney – two patients who are driven to expedite drug delivery to the people who live around the world with CMT. We offer:

Personal Experience

Both founders are living with CMT. We know what it is like to live with the disease and to care for affected family members. We want treatments and cures now.

Professional experience

We have over 20 years of collective experience working with CMT researchers to deliver treatments.  We were instrumental in recent successful milestones in CMT research.

partnerships

We have developed and maintained partnerships with the most respected and accomplished researchers, industry professionals and families who live with CMT.

Meet the Founders

Susan Ruediger

Founder & CEO

susan@cmtrf.org

Susan was diagnosed with CMT1A when she was 18 months old and can trace the genetic disease back five generations in her mother’s family. After the birth of her first child, Susan started a local CMT support group to get more information and resources for CMT. Since 2007, Susan has been deeply engaged with the patient and research communities, building connections to fund efficient and effective research leading toward drug delivery. Susan is driven to deliver treatments to all people living with CMT.

Susan brings her strategic planning, operational, communications, fundraising and non-profit management experience to CMT Research Foundation. As a member of the BIO Patient Advocacy Committee, Susan built a robust network of experts in drug delivery and patient advocacy and continues to be sought after by peers in patient-led drug discovery and as an expert in CMT. She shares her knowledge of CMT at Georgia Tech, Emory University, Hanger, Inc., The American Orthotic and Prosthetic Association and BIO.  She is a former board member of the Junior League of Atlanta.  Susan holds a Bachelor of Arts from Clemson University.

Patrick Livney

Founder and Chairman of the Board of Directors (Volunteer)

pat@cmtrf.org

Pat is an entrepreneur, specializing in finding gaps then building businesses to fill them.   Pat has CMT type 2 and has been volunteering on behalf of families living with CMT for years.  Through this work, he has come to understand the gaps in delivering treatments for CMT and wants to make therapies available for all types of CMT.  Since 2008, Pat has been instrumental in developing the CMTA’s STAR Research platform, dedicated to treating CMT through drug development, and has worked with the brightest minds and talent in CMT research.

Pat is currently CEO of Loan EcoSystem Online.  Pat served as the CEO of the Charcot Marie Tooth Association for five years and, prior to that, was the Chairman of the CMTA’s Board of Directors for four years.  Previous professional experience includes serving as the senior managing director and head of the Structured Finance Group at Vanderbilt Capital Advisors where he grew assets from $300M to over $20B in four years. He also functioned as the CEO and chairman of the Vanderbilt Financial LLC, a permanent capital vehicle. Prior to that, Pat held senior positions in Institutional bond sales for Wall St firms.  Pat holds a degree in industrial engineering from Roosevelt University in Chicago. He also holds series 3, 7, and 63 certifications.

Pat brings decades of professional experience in structured finance coupled with a personal passion to end CMT to Charcot-Marie-Tooth Research Foundation’s Board of Directors.

Industry Partners

Patient-Based Drug Discovery

A fast-growing biotechnology company striving to find cures for a number of neurodegenerative diseases via a new disruptive technological advancement called patient-based drug discovery. In partnership with the CMT Research Foundation, AcuraStem is conducting a drug screen for CMT2A. 

Innovations in Wearable Sensors for Healthcare

Together with our clinical research and enterprise partners, we develop innovative, market driven, wearable sensor solutions that address some of healthcare’s biggest challenges.

Board of Directors

Meet the Board of Directors who govern the activities of The CMT Research Foundation.

Advisory Board

Meet the experts who guide us on the path to funding treatments and cures for CMT.

Volunteers

Meet the volunteers who assist in the operations of The CMT Research Foundation.