At its recent annual meeting, The CMT Research Foundation (CMTRF), a patient-led non-profit focused on delivering treatments and cures for Charcot-Marie-Tooth disease* made changes in its leadership to support the next phase of the Foundation’s growth.

The Foundation Board of Directors elected Peter de Silva as its new Chair replacing Patrick Livney, co-Founder of CMTRF and outgoing Board Chair, who has completed his term and will step away from day-to-day involvement.  The board has elected Mr. Livney Chair Emeritus in recognition of his vision and foresight in co-founding the CMT Research Foundation and his strong and passionate leadership over the last 6 years.

Mr. de Silva, a board member since 2021, has led a 3-year capital campaign with the goal of raising $10 million for CMT1A research and therapy development.  Nearly $8 million has been raised in the campaign’s first two and a half years.  Mr. de Silva is the newly announced CEO of IRALOGIX which enables institutional partners to rapidly launch profitable white-label IRA programs that leverage institutionally priced investments as well as professional advice and education. The company’s modular technologies are cloud-native and support a fully paperless process with no account minimums.

Mr. de Silva is also the former retail president at TD Ameritrade, 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, compliance and risk management. He is also well-known as a tireless community leader and champion, especially in his adopted community of Kansas City. Mr. de Silva is widely recognized for his ability to drive outsized results by creating a compelling vision, building the strategy, aligning the resources, and executing the plan.  He possesses strong executive leadership skills and board credentials. A high-energy, highly engaged servant leader, he is committed to developing world-class talent and winning organizations.

Mr. de Silva is currently on the boards of Edelman Financial Engines, Prosper Marketplace, Inc., Infosel, IRALOGIX, Fidelity Security Life Insurance Company, the Robert W. Plaster Trusts and Charitable Foundation, MRI Global, and the UMASS Dartmouth Foundation.

“I am honored and humbled by the opportunity to help lead the CMTRF as its next Board Chair.  The CMTRF has come a long way since its founding,” says Mr. de Silva, “We have amassed an amazing team of employees, donors, board members, and the best scientists in the world collaborating to find treatments and therapies for all types of CMT.  Our annual Global CMT Research Convention has become the gold standard across the global CMT community.  We will continue our work until there are effective treatments and therapies for all CMT types.”

Cleary Simpson was elected Vice Chair of the Board.  She will continue to serve as CEO until her successor is in place and onboarded.  The Foundation has engaged Heidrick & Struggles, a nationally known and highly respected search firm, to assist in recruiting the next CMTRF CEO.

“When I assumed the CEO position, my mission was to set up the Foundation for growth and reputational excellence,” says Ms. Simpson. “CMTRF is in a great place today. We’ve added significant strength to our scientific staff with a new Director of Research, a Research Advisory Committee and the expansion of the Scientific Advisory Board.  They work closely together to ensure the strength of our research portfolio and its ability to address challenges in CMT drug development.   We have brought exceptional new talent to the Board. And while we have funded almost 25 projects across multiple CMT types including 1A, 1B, X, 4B, 2E and 2A, we know that there is still much to be done. As a research organization, it is critical that we continue to evolve and bring in more drug development expertise to drive the achievement of our mission.”

Dr. Arthur Suckow, Founder and former CEO of DTx Pharma and CMTRF board member added, “I promised patients that I would not leave CMT research or retire until there was an approved drug for one or more CMT subtypes.  I am delighted to continue to partner with Cleary and Peter to fill in the white space around CMT research and drug development.  This new generation of leadership and scientists will allow CMTRF to reach levels of success that can achieve what was only imagined when CMTRF was founded.”