Board of Directors | CMT Research Foundation

Peter J. deSilva

Board Chair CMT Research Foundation and CEO of Iralogix

Peter deSilva is CEO of IRALOGIX and a former 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.

Cleary Simpson

Vice Chair of the Board of Directors

Cleary Simpson is a founding member of the Board of CMTRF and accepted the Board’s appointment as CEO as part of a planned succession strategy on January 10th, 2022. She served until October 16, 2024 then became Vice Chairman of the Board. According to Board Chair Peter de Silva, “Her tenure brought fresh perspectives, increased awareness, fundraising success and strategic investments in many new exciting potential CMT therapies, and inspired employees (and Board members) through her unique leadership style. She served well beyond the Board’s requested term and CMTRF is better for it.”

Ms. Simpson came to CMTRF with 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, Ms. Simpson 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, she worked in senior positions at Time Inc. properties, including TIME magazine and Sports Illustrated.

Ms. Simpson 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.

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.

Santo Caivano

Customer Engagements, Cisco’s Critical Accounts Program

Santo Caivano is Director, Customer Engagements of Cisco’s CAP (Critical Accounts Program) Americas team resolving the most complex and critical problems of Cisco customers. He joined Cisco in March 2011 as Cisco acquired Inlet Technologies, a company where he was a principal and led Product Management, Professional Services, and Technical Services. Prior to Inlet Technologies, Mr. Caivano spent over a decade leading teams in several successful start-ups, including three which were acquired and one that went public. Earlier in his career, Mr. Caivano worked at IBM.

He holds a bachelor’s degree in industrial relations from the University of North Carolina, an Executive Certificate in Leadership from the University of Notre Dame and he completed eCornell’s Diversity, Equity, and Inclusion program.

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.

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

Dr. Motley is currently Senior Director of Clinical Development and Program Lead at Rapport Therapeutics, a precision neuroscience company, and worked as a consultant to the company’s founding team at Boston-based Third Rock Ventures. Previously he served as Director of Translational Medicine for Flare Therapeutics and was a Senior Associate at Third Rock Ventures where he was a member of Flare’s founding team and worked on diverse aspects of company creation. Dr. Motley also serves as a member of the Medical and Scientific Advisory Board of Palvella Therapeutics, a company focused on bringing therapies to patients with rare dermatologic diseases with no approved therapies. A member of CMTRF’s Scientific Advisory Board since 2020, he holds an MD from the University of Pennsylvania, a Doctorate in Neurogenetics from the University of Oxford (UK) and a BA in Biochemistry from Middlebury College.

He completed a neurology residency at the Johns Hopkins University School of Medicine. His doctoral and post-doctoral research experiences focused on identifying new causes of CMT, and characterizing pathological mechanisms of the disease.

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. Suckow is an innovative executive leader and scientist with 15 years of experience leading drug development programs across multiple therapeutic areas leveraging small molecules, biologics and oligonucleotides. Most recently, he founded DTx Pharma and served as its Chief Executive Officer until it was acquired for $1B by Novartis. In 6 years, he helped this San Diego-based RNA therapeutics company develop a pipeline of therapies for rare diseases, including CMT1A, and raise more than $120M through grants and leading healthcare investors. Prior to DTx, he served in roles of increasing responsibility at Johnson & Johnson, MedImmune/AstraZeneca and Regulus Therapeutics.

Dr. Suckow received his undergraduate degree in Biological Sciences from University of Delaware and his PhD in Biomedical Sciences/Pharmacology from University of California, San Diego. In addition to being on the board of CMTRF, he currently serves as a strategic and/or scientific adviser to Transcera, Actio Biosciences, Palm Therapeutics and numerous institutional investors. He has received numerous awards throughout his career including a Beckman Fellowship, a NSF graduate research fellowship, and a BIOCOM catalyst award.

Patrick Livney

CEO, LoanEco Systems Online

Board Chair Emeritus

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.

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.

CMTRF Board of Directors