Replaces Cleary Simpson who becomes Vice Chair of the Board

Atlanta, GA (October 16, 2024) The CMT Research Foundation, a non-profit focused solely on delivering treatments and cures for Charcot-Marie-Tooth disease (CMT)* has hired Laura MacNeill as Chief Executive Officer, it was announced today by Foundation Board Chair Peter de Silva. Ms. MacNeill succeeds Cleary Simpson, CEO for the past three years, who becomes Vice Chair of the Board.

“Ms. MacNeill has more than 15 years of experience as a senior nonprofit executive responsible for strategic planning, innovative marketing, fundraising, and raising public awareness – skills that will be vital to take CMTRF to the next level,” says Mr. de Silva.

“CMTRF is in a great place today thanks to the extraordinary work of Cleary Simpson and her staff,” he adds.” 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. 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 and fund-raising expertise to secure the achievement of our mission. I am pleased that Cleary will stay heavily involved in the day-to-day activities of the Foundation as Vice Chair.”

“When I assumed the CEO position, my mission was to prepare the Foundation for smart research investment and reputational excellence,” says Ms. Simpson. “As we grow in size and impact, Laura will add significant expertise in nonprofit management, particularly in development.  At CMTRF as we see the rapid growth in drug development for many diseases around the world – we are standing on the brink of exciting progress in treatments for CMT. 

“With major scientific breakthroughs, increased interest in CMT from drug developers, and the announcement of new clinical trials, there is great hope for CMT therapies. This progress is a clear signal to maintain our focus, our urgency and move as many therapies forward to clinical trials as possible, until there are approved treatments for all types of CMT.”

“I am honored by the opportunity to lead the CMTRF,” says Ms. MacNeill. “The Foundation has made extraordinary progress in 6 years, amassing 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.  With CMT in my family, I share the urgency of the entire CMT community to find a cure.”

Ms. MacNeill comes to CMTRF from Global Lyme Alliance (GLA), a nonprofit dedicated to fighting Lyme disease through research, awareness and patient support, where she has been Chief Executive Officer since July 27, 2022.  She joined GLA from the Leukemia & Lymphoma Society (LLS), where she served as Executive Director of New England Region and before that as Executive Director of the Central Pennsylvania Chapter three years prior. Before her Executive Director roles at LLS, Ms. MacNeill was Regional Community Development Officer at Harrisburg Area Community College and held Campaign Director and Manager roles at LLS.

Ms. MacNeill holds a BA from Millersville University and a Master of Business Administration from Purdue Global (formerly Kaplan University). She and her husband, Adam, have two children and live outside of Harrisburg, PA.

*CMT Research Foundation(CMTRF) is a patient-led, non-profit focused on delivering treatments and cures for CMT. The foundation identifies significant obstacles or deficiencies impeding progress toward a cure and seeks out collaborators to address these issues. To date, CMTRF has funded 24 projects, of which 8 are completed. Of those 8 completed projects, 5 have clinical candidates. CMTRF’s mission to invest in promising science with high potential of leading to treatments and cures was proven effective and ground-breaking when DTx Pharma with a CMTRF- backed program as its lead candidate was acquired by Novartis for $1 billion. Founded by two patients who are driven to expedite drug delivery to people who live with CMT, the 501(c)(3) federal tax-exempt organization is supported by personal and corporate financial gifts.

*Charcot-Marie-Toothencompasses a group of inherited, chronic peripheral neuropathies that result in nerve degradation. CMT patients suffer from progressive muscle atrophy of legs and arms, causing walking, running and balance problems as well as abnormal functioning of hands and feet. CMT affects one in 2,500 people (about the same prevalence as cystic fibrosis), including 150,000 Americans and nearly 3 million people worldwide. At the moment, there is no treatment or cure for CMT.

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