CMTRF Board of Directors

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

Patrick Livney

CEO, LoanEco Systems Online

Founder and Chairman of the Board of Directors

Patrick Livney 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 CEO of the Charcot Marie Tooth Association (CMTA) 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, Pat held senior positions in institutional bond sales for Wall Street 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 the CMT Research Foundation’s Board of Directors.

Susan Ruediger

Founder and Chief Executive Officer

Susan Ruediger 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 development. 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 the CMT Research Foundation. As a member of the BIO Patient Advocacy Committee, Susan built a robust network of experts in drug development 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.

Dr. Paul August

Rare Genetic Disease Head, Agios Pharmaceuticals

Dr. Paul August has held key scientific and leadership roles for over 18 years with the global pharmaceutical company Sanofi.  Paul began his Sanofi career in 1998 at the Hoechst-­Ariad Genomics Center in Cambridge, Massachusetts. In 2010, he established the US Early to Candidate Unit in North America at Sanofi R&D site in Tucson, Arizona. Paul has also pursued innovative, entrepreneurial, business strategies to identify and develop innovative therapeutics and was one of the key leads on a CMT discovery project at Sanofi. In 2016, Sanofi divested the site and Paul advanced numerous Rare Disease discovery programs to key inflection points with external and internal partners.

His efforts have focused on building external partnerships with academic investigators, biotechnology companies and rare disease patient foundations. Paul’s research has been particularly focused on developing disease-relevant, human-stem-cell-derived models. At Agios Pharmaceuticals Paul is focused on discovering and developing novel drugs to treat rare genetic disorders of metabolism by inhibiting or stabilizing/activating key metabolic target nodes, Paul is a drug discovery leader with experience advancing preclinical strategies and their implementation to facilitate bringing transformative therapies to patients.

Susan Canavari

Senior Vice President, TIAA

Ms. Canavari is the senior vice president of marketing for TIAA, a New York City-based Fortune 100 financial services organization that provides financial services to the academic, research, medical, cultural and governmental fields. Before her time at TIAA, she was the global chief brand and experience officer for JPM Wealth Management where she was responsible for brand and experience for JPM’s Asset Management and Private Bank Businesses. She started at JPM Chase as the chief brand officer for Chase where she worked on marketing all lines of business, including cards, retail bank and Chase for Business as well as ran the internal creative services, newsroom and global employee recruitment marketing.

Earlier in her career, Ms. Canavari worked at several top advertising agencies; she was a managing director of Mcgarrybowen, a global, full-service, integrated marketing communications agency network; and held senior positions at Digitas and Ogilvy & Mather. She holds a B.S. in Mass Communication from Miami (Ohio) University and an M.B.A. from Boston College.

Peter J. deSilva

Fellow, Harvard University Advanced Leadership Initiative

Mr. deSilva is a fellow at Harvard University in the institution’s Advanced Leadership Initiative. Most recently, he spent three years as the retail president for TDAmeritrade, where he was responsible for all facets of the $5B+ retail business segment, including strategy formulation, financial performance, sales, digital strategy, distribution, client experience, associate experience for the 5,000 employees, and compliance and risk management. He also served as president of Scottrade Financial Services and UMB Financial Corporation as well as a senior leader at Fidelity Investments.

Mr. deSilva understands the immense physical and mental toll of CMT as he and his family are personally affected. He joins the board of directors to raise significant capital to invest in drug development research projects that lead to treatments and cures for CMT. Outside the office, Mr. deSilva is passionate about history, boating, cycling, diving and volunteering for causes that are important to him and his family.

Jeffrey Ellman

Partner, Jones Day

Jeff Ellman is a partner in the global law firm Jones Day, and resides in Atlanta, Georgia.  Jeff has 25 years of experience representing parties in large corporate and municipal restructurings, with a focus on debtor representations in bankruptcy. He served as counsel in the historic bankruptcy and sale of Chrysler at the peak of the financial crisis and represented the City of Detroit in the largest municipal bankruptcy in history. Jeff also has extensive experience representing asset purchasers, significant creditors, secured lenders and equity sponsors in distressed situations.

Jeff is a member of the American Bankruptcy Institute and serves on the boards of the Southeastern Bankruptcy Law Institute and the Emory Bankruptcy Developments Journal.  He has served on nonprofit boards, addressing arts, education, and greenspace issues and currently is on the board of GALEO (Georgia Association of Latino Elected Officials). He is a 2014 graduate of Leadership Atlanta.  He earned his Bachelor of Arts at the University of Michigan and his juris doctor degree at Harvard Law School.  Jeff’s son, Jaden, has CMT Type 1E.

Adam Kauffman

Engineer Manager, STORD

Adam Kauffman has been a software engineer for the past 20 years, specializing in internet security and managing the development of products for Fortune 500 companies, banks and the federal government. He recently joined STORD as Engineering Manager.  Before that He was at Pindrop for four years, and for nine years before that, was staff software engineer at Damballa. From 1998 to 2006, Adam was a senior software engineer with EarthLink. He is a graduate of the Georgia Institute of Technology.

In his personal time, Adam volunteers in his community. He has served on the executive board of his neighborhood civic association, as a mentor with his alma mater and with his local elementary school. He is an Eagle Scout, who is still active in scouting with his local Pack and kids. He has CMT1A, as do his mother and sister. Adam and his wife, Kate, live in Brookhaven, Georgia, with their children, James and Sam.

Dr. Michelle Moon, MD

Neurologist, Vancouver Clinic

Dr. Michelle Moon is a board-certified general neurologist, in practice for 10 years. Her motivation for serving on the board of CMTRF is deeply personal: In 2016, she lost her 5-year-old daughter, Julianna, to a severe and rare form of CMT. Michelle’s story received international attention on CNN and in People Magazine.  She was pleased to bring attention to the little known but not-so-rare disease, but her ultimate goal is to find a treatment. She continues to tell Julianna’s CMT story and the story of a grieving family on the blog (juliannayuri.com) and throughout social media.

Michelle brings her clinical expertise and her personal passion to help CMTRF deliver treatments with the goal of preventing other families from suffering the devastating loss of a child to CMT. 

Michelle received her medical degree from Nova Southeastern University and completed her neurology residency at the University of Colorado. She lives in Washougal, Washington, with her husband, Steve, and son, Alex.

Cleary Simpson

Marketing and Media Consultant

Cleary Simpson has more than 30 years of experience in the media industry. She held senior positions in sales, marketing, business development, and general management at Time Warner working with major brands and advertising agencies.  Most recently, she was managing director at consulting firm MediaLink, advising early-stage digital ventures, as well as mature media companies, on business strategy, revenue acceleration and organizational restructuring. Before that, Cleary was senior vice president for Global Marketing Solutions at Time Warner Inc., managing multi-platform partnerships with iconic national brands. Prior to that, she worked in leadership roles at several Time Inc. properties including TIME Magazine and Sports Illustrated.

Cleary served on the boards of DoSomething.org, and of St. Lukes’, a private school in New Canaan, Connecticut.  She holds a Bachelor of Arts in history and Asian studies from Connecticut College and was a Fulbright Fellow in Japan.

Her daughter, Anna, has CMT1A.  Cleary believes that CMT Research Foundation’s singular focus on funding research will accelerate the identification and development of cures for CMT.