CMTRF Board of Directors

Patrick Livney

CEO, LoanEco Systems Online

Founder and Chairman of the Board of Directors

Pat has CMT type 2 diagnosed but unconfirmed and has volunteered 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 close them by making therapies available for all types of CMT.

Pat served as Chairman of the Board of Directors of the Charcot Marie Tooth Association for four years and as its CEO for five years. In 2008, he was instrumental in developing the CMTA’s STAR Research platform, dedicated to treating CMT through drug development. To this day, Pat continues to work with the brightest minds and best talent in CMT research.

Pat is currently CEO of Loan EcoSystem Online. Before that, he was the senior managing director and head of the Structured Finance Group at Vanderbilt Capital Advisors where he grew assets from $300 million to over $20 billion 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. He has a degree in industrial engineering from Roosevelt University in Chicago and holds series 3, 7, and 63 certifications.

Cleary Simpson

Chief Executive Officer

Cleary Simpson has more than 30 years of experience in the marketing and advertising industries, having held senior positions in general management, sales and marketing, business development, emerging markets and product development. Before joining the Board of CMTRF, she was a Managing Director at consulting firm MediaLink, where she advised Fortune 500 media and entertainment companies and emerging technology companies on business strategy, revenue acceleration and organizational restructuring.

Prior to joining MediaLink, she was Senior Vice President for Global Marketing Solutions at Time Warner Inc., managing relationships with major companies such as Johnson & Johnson, Campbell’s, Wal-Mart, McDonald’s and Cadbury, to develop integrated advertising and content partnerships across Time Warner’s television, print, digital, film and book publishing companies. Earlier, Cleary worked in senior positions at Time Inc. properties, including TIME magazine and Sports Illustrated.

Cleary is a founding Board member at CMTRF and also served on the Boards of Do Something and St. Luke’s School (New Canaan, CT). She holds a BA in History and Asia Studies from Connecticut College and was a Fulbright Fellow in Japan.
Her daughter, Anna, has CMT1A.

Dr. Paul August

Chief Scientific Officer at ReviR Therapeutics

Paul is a scientific and business leader with extensive drug discovery experience across multiple therapeutic areas. His primary focus has been on genetically defined diseases where he has advanced therapies in benign hematology diseases and inborn errors of cellular metabolism. He has headed the Genetically Defined Disease Biology efforts at Agios Pharmaceuticals in Cambridge Massachusetts since March 2020. At Agios, Paul is focused on discovering and developing novel drugs to treat rare genetic disorders of metabolism by modulating key metabolic targets and pathways using small molecules and antisense approaches to advance transformative therapies to patients.

Paul was employed by Sanofi and its legacy companies for over 18 years until a divestiture of research activities to Icagen Pharmaceuticals took place in 2016. He is an advocate for CMT research and a CMTRF board member since 2018.

Maximiliano Barrientos

Co-founder, Investor and CFO, EntreConsultas.AI

Mr. Barrientos is a Co-founder, Investor and CFO of EntreConsultas.AI, a start-up in artificial intelligence providing biometric authentication services to fintech and insurance companies. As someone who lives with CMT, Mr. Barrientos understands the complexity – and urgency – of finding a cure and shares CMTRF’s vision and singular mission.

Before EntreConsultas.AI, Mr. Barrientos spent 11 years with TE Connectivity based in Berwyn, PA (a $15 billion Swiss technology company that designs and manufactures connectors and sensors), serving in financial positions of increasing scope and responsibility. Before that, he was with Bunge Limited (a $50 billion food and agribusiness company headquartered in White Plains, NY) as Strategic Planning Associate. Mr. Barrientos started his career with General Motors as a Finance Analyst based in Buenos Aires. He holds an MBA degree from the Wharton School of the University of Pennsylvania and a degree in Business Administration/CPA from Argentina’s Universidad Austral.

Susan Canavari

Secretary of the Board of Directors

Susan Canavari was the senior vice president of marketing for TIAA, a New York City-based company that provides financial services to the academic, research, medical, cultural and governmental fields. Before that, Susan 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 banking and Chase for Business as well as ran the internal creative services, newsroom and global employee recruitment marketing.

 Earlier in her career, Susan worked for 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

Senior Fellow, Harvard University Advanced Leadership Initiative

Peter deSilva is a Senior Fellow at Harvard University Advanced Leadership Initiative. Before that, he spent three years as the retail president for TDAmeritrade, where he was responsible for all facets of the +$5 billion 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. Peter also served as president of Scottrade Financial Services and UMB Financial Corporation as well as a senior leader at Fidelity Investments.

Peter understands the immense physical and mental toll of CMT having been diagnosed with 1A in his early teens. 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.

Adam Kauffman

Director of Engineering, STORD

Treasurer of the Board of Directors

Adam Kauffman has been a software engineer for the past 20 years, specializing in internet security and managing the product development for a number of Fortune 500 companies, banks and the federal government. He joined STORD as Engineering Manager in 2020. 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.

Adam has CMT1A, as do his mother and sister.

Will Motley

Rapport Therapeutics

Joe Mulvey

President, Ealaín Technology Solutions LLC

Joe Mulvey is founder and President of biopharma consulting firm Ealaín Technology Solutions LLC (ETS), which combines project management, process design and finance solutions for the biopharmaceutical industry. His achievements include the successful tech transfer of two major biologics for client CSL Behring. He is currently leading the integration and startup of DeltaV™ process automation across the new $800 million bulk biomanufacturing operations for Merck and the expansion of its Gardasil®9 vaccine franchise.

Prior to founding ETS, Joe served as a process engineer and Head of Critical Systems at then Centeon LLC. Earlier in his career, Joe was VP of the Life Science practice of AECOM Corporation doubling its service revenues within 3 years. Joe also advanced the practice into the west coast with new clients and successfully secured two opportunities in China.

To launch his career, Joe joined Ernst & Young’s Life Science practice where he was part of the advisory team to Searle for the launch of Celebrex®. He also acquired certification in the ERP solution SAP® and led EY’s first ERP system validation.

Joe served 6 years on University of Illinois Alumni Association Board of Directors. As head of the Technology Committee, he developed a business plan recommending implementation of a CRM solution to profile and predict major donor candidates. Later, Joe was nominated and served three terms on the Alumni Board at the Illinois Institute of Technology.

Joe is a dual degreed engineer across three majors (BioE, Electrical and Computer Engineering) with an MBA in Finance and Economics from the University of Chicago.

Susan Ruediger

Founder and Chief Mission Officer

Susan has CMT1A that she can trace back five generations in her mother’s family. Since 2007, she has been deeply engaged with the patient and research communities, building connections to fund efficient and effective research leading toward drug delivery.

From its launch in 2018, she was the Foundation’s CEO. In January 2022, she became the organization’s first Chief Mission Officer continuing to serve on the Board of Directors, helping support CMTRF’s rapid financial growth and serving as the primary spokesperson for the Foundation. Before that, she held an executive position with CMTA.

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 has spoken on CMT at Georgia Tech, Emory University, Hanger, Inc., The American Orthotic and Prosthetic Association and BIO. Susan holds a Bachelor of Arts from Clemson University.

Thomas Sander

Clinical Account Manager, Hematology Rare Disease at Sobi Biotech

Thomas, whose daughter has CMT, has been a Clinical Account Manager, Hematology Rare Disease at Sobi Biotech since 2021 and before that was a Key Account Manager, Infectious Disease at Paratek Pharmaceuticals. He has been a rare disease advocate for the past 15 years, both personally and professionally serving as a key Account Manager with increasing scope and authority for small to mid-sized Biotech’s.  In his earlier career, Thomas founded Nexus Technology Group, an outsourced IT company for small to mid-sized businesses in Columbus, Ohio and is a graduate of Miami University.

Dr. Arthur Suckow

Former Co-founder and CEO of DTx Pharma

Dr. Michelle Moon, MD

Neurologist, Vancouver Clinic

Board Member Emeritus

Dr. Michelle Moon is a neurologist and palliative care physician, in practice for more than 10 years. Michelle brings her clinical expertise and her personal passion to CMTRF with the goal of preventing other families from suffering the devastating loss of a child to CMT.

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. The coverage brought attention to CMT, but her ultimate goal is to help the Foundation find a treatment. She continues to tell Julianna’s CMT story and the story of a grieving family on the blog (michelle-moon.com) and throughout social media.

Michelle received her medical degree from Nova Southeastern University and completed her neurology residency at the University of Colorado.