About HNF

Foundation Leadership

The Hereditary Neuropathy Foundation is led by people who live and breathe the CMT mission, founded by a patient and run by a team that pairs lived experience with deep expertise. Meet the people guiding HNF's work toward treatments and cures.

Leadership team

Courtney Hollett
Courtney Hollett Executive Director
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Courtney Hollett is HNF's Executive Director, leading the foundation's day-to-day operations, fundraising, and programs. She joined HNF in 2012 and has grown with the organization ever since, building deep expertise across development, database management, financial reporting, event coordination, and the community of Team CMT fundraisers and volunteers she helps steward. Courtney has personal connections to CMT through her own family, which drives her commitment to raising awareness and supporting the families HNF serves. She holds a Bachelor of Science from Salve Regina University in Rhode Island. A married mother of three, she enjoys time at the beach and traveling with her family.

Estela Lugo
Estela Lugo Program Development Manager
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Estela Lugo is HNF's Program Development Manager. Diagnosed with CMT at age four, and joined three years later by her younger sister, she grew up on Long Island in a family that became active advocates and fundraisers for CMT and muscular dystrophy, so joining HNF was a full-circle moment. After volunteering with the foundation for eight years, she came on staff in 2018, bringing a background in design, marketing, and creative direction to the work of connecting patients with wellness and a better quality of life. A speaker and educator, Estela co-teaches inclusive and adaptive design at the Fashion Institute of Technology and gave a TEDx talk, RePurpose Your Pain, on turning adversity into meaningful work.

Matt Jarpe
Matt Jarpe Chief Science Officer
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Matt Jarpe is HNF's Chief Science Officer, with more than twenty-five years in drug discovery across large biotech and startup companies and deep experience in oncology, neuroscience, autoimmunity, and inflammation. A co-author on numerous publications, he has collaborated on dozens of research projects with academic scientists around the world. As a biotechnology drug hunter he has pursued treatments for rare diseases including progressive supranuclear palsy, sickle cell disease, beta thalassemia, Charcot-Marie-Tooth disease, inborn errors of metabolism, and alpha-1 antitrypsin deficiency. Today he advises patient advocacy and rare-disease organizations, helping them align their strategic goals with the academic and industry research most likely to reach patients.

Bernadette Scarduzio
Bernadette Scarduzio Social Media Coordinator
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Bernadette Scarduzio, known to everyone as Bern, is one of the most recognizable faces of CMT and a longtime national spokesperson for HNF. She lives with CMT type 1A, the form that ran through her family for generations, and was diagnosed as a child when few people, even doctors, had heard of the disease. Her life became the subject of Bernadette, the first full-length documentary on Charcot-Marie-Tooth disease, filmed over four years and funded by HNF, which followed her journey from patient to advocate with one goal: to make CMT a household word. In the years since she has raised awareness and funds, sat on public-policy panels at the CMT Summit, and shown the community what it looks like to keep fighting, through pool and land therapy, meditation, and sheer will. A certified personal trainer, Bern believes awareness is the key to a cure.

Ellen Morgan
Ellen Morgan Clinical Research Officer
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Ellen Morgan is HNF's Clinical Research Officer, bringing more than twenty-five years of drug-development experience across large pharma, small biotech, and contract research organizations. She founded and led two successful clinical research organizations, Synteract and Agility Clinical, and most recently served as President of Rare Diseases at Precision for Medicine. Agility focused on rare-disease trials, spanning more than 32 rare indications including Duchenne muscular dystrophy, Friedreich's ataxia, and the pivotal program behind the first approved treatment for Rett syndrome. Since leaving the CRO industry in 2020 she has supported numerous rare-disease patient organizations and the n-Lorem Foundation. Ellen holds a BS in chemistry and an MS in management and industrial engineering, with postgraduate study in statistics and genetics.

Cherie Gouaux
Cherie Gouaux Bookkeeper
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Cherie Gouaux is HNF's bookkeeper, keeping the foundation's finances in order so that every dollar raised can go to work advancing awareness, support, and research. She joined HNF in July 2013, bringing accounting experience across both the corporate and nonprofit sectors, and holds a Bachelor of Business Administration in Marketing Communications from Mary Baldwin College. She is passionate about helping people living with Charcot-Marie-Tooth disease and takes pride in the behind-the-scenes work that keeps HNF running and accountable to the donors and families it serves. Cherie is married with two children and enjoys yoga and traveling with her family.

Board of Directors

HNF's Board of Directors brings together leaders from business, the medical-device industry, and finance, many of them CMT patients or parents of children with CMT, to steer the foundation's mission toward treatments and cures.

Matthew Downing
Matthew Downing Chairman
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Matt is the Chief Marketing and Innovations Officer at MedPower, a cloud-based learning company serving the healthcare industry, where he leads global marketing and product teams and guides marketing strategy, product development, branding, and analytics. Earlier in his career he was Chief Marketing Officer at the start-up TriPlay and ran sales and marketing for SiriusXM as the company grew into the world's largest radio broadcaster, with earlier marketing leadership roles at DIRECTV, Grey Advertising, and Young & Rubicam. He is a graduate of the University of Michigan. Matt is a CMT1A patient and the father of three children with CMT.

Kara Sprague
Kara Sprague Treasurer
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Kara spent seven years as a Vice President in the internal audit function of Barclays Investment Bank in New York, specializing in finance, compliance, and financial crime, and leading global strategic change initiatives. Before Barclays she was a Manager at KPMG for six years, focused on financial statement audits for banks and other financial institutions in Chicago and New York. She earned her Bachelor of Science in Accountancy from the University of Illinois. Kara became involved with HNF after moving to New York in 2010, dedicated to raising awareness and supporting research that improves the lives of her family members and others impacted by CMT, and has since relocated to Los Angeles, where she is expanding HNF's network on the west coast.

Brooke Warren
Brooke Warren Secretary
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Brooke is the proud mother of a smart, articulate daughter dealing with the challenges of CMT1A. She has dedicated herself to finding the best care for her daughter and husband, serving as the family's primary medical advocate through several surgeries, and first sought out HNF as a way to be better prepared for the challenges ahead. She is committed to finding a cure for all children and to sharing what she has learned about effective treatments with other families. Brooke earned a Bachelor of Science in Civil and Environmental Engineering from the University of Notre Dame, a Master of Engineering Management from Northwestern University, and an MBA from Northwestern's Kellogg School of Management.

Daniel McQuade
Daniel McQuade Board Member
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Daniel McQuade has built a career on a single principle: curiosity is a strategy. At Columbia Business School he has served as Adjunct Lecturer and as Director and Instructor of the Venture for All global entrepreneurship program, teaching founders and business leaders that asking what comes next is a competitive advantage. He has founded four companies, from one of the first blockchain solutions on IBM's Food Trust platform to early direct-to-consumer commerce ventures, and has directed more than $7 million in grants supporting education, health, and wellness across New York City. Diagnosed with CMT later in life, he understands what earlier diagnosis and treatment could mean for the community, and joined HNF's board to put his skills as an educator, entrepreneur, and technologist to work accelerating progress toward a cure.

Dennis Sullivan
Dennis Sullivan Board Member
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Dennis has spent his 36-year career in medical devices, with deep experience across research and development, operations, quality, and sales and marketing. Having worked at both start-ups and Fortune 500 companies, including Johnson & Johnson and Medtronic, he brings invaluable experience in building relationships with the medical community, shaping regulatory strategy, and guiding medical-device design and product launch, all of which he puts to work supporting HNF within the medical industry. Dennis comes to the team with direct experience of CMT, which a member of his family lives with. His goal with HNF is to create awareness of hereditary peripheral neuropathies, work with industry leaders on therapies for today, and help drive an eventual cure for future generations.

Dominic Hadeed
Dominic Hadeed Board Member
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Dominic Hadeed leads or holds investments in a diverse group of successful enterprises in the Caribbean, including Blue Waters Products Limited, Blue Waters St. Lucia Limited, Fabric Land Limited, and Domhad Properties Limited. He is a member of the Young Presidents Organization and one of the few members from Trinidad and Tobago in that global community of chief executives. In 2015 he was named Ernst & Young's Master Entrepreneur of the Year and EY's country winner for Trinidad and Tobago, and in 2016 he represented the country at EY's World Entrepreneur of the Year gala. Under his leadership, Blue Waters Products Limited was named Best Managed Company 2019 by Deloitte & Touche.

Natalia Salejko
Natalia Salejko Board Member
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Natalia Salejko is a happy wife and the mother of two wonderful girls, one of whom lives with CMT4A. Her professional background spans marketing, medical environments, and operations management for an international company headquartered in London, and she currently serves as office manager for Allegro, the largest e-commerce company in Poland. After living in the United Kingdom for fourteen years, her family relocated to Poland. Medicine has always been one of her greatest passions, and her family and growing team are laser-focused on finding a cure through aggressive fundraising across many channels, determined that her daughter's generation will grow up with treatments that do not exist today.

Sital Bhavsar
Sital Bhavsar Board Member
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Sital Bhavsar sought out HNF after her daughter was diagnosed with CMT2A. Learning how much the science had advanced, she decided she wanted to help HNF cross the finish line on treatments for children like her daughter. She is unwavering in her support of scientific research and believes that, with the right advocacy, a definitive treatment can become a reality. Sital brings that same determination to the board, where she works to grow awareness of CMT and strengthen the community of families facing it. For her the mission is deeply personal: every advance in CMT research is an advance for her own daughter's future.

Kenneth "Sonny" Granger
Kenneth "Sonny" Granger Board Member
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Sonny is the President of Granger Development, Inc. and a licensed real estate broker in Florida, Alabama, and Georgia. He is also a Principal and Senior Advisor at SVN Southland Commercial Real Estate, with more than twenty years of experience across every major property type and a proven track record of success. Among other projects, Granger Development was the lead developer of The Tennyson, Downtown Tallahassee's first residential high-rise condominium: a fourteen-story, ninety-unit building a block from the Florida State Capitol that helped win the City of Tallahassee's Visionary Award.

Staff & scientific advisors

The board and leadership team are supported by HNF's program staff and by a Advisory Board and Council of researchers and clinicians who guide the foundation's research strategy.

The organization they lead

A foundation built by, and for, the CMT community

Since 2001, HNF has grown its reach worldwide. In 2010, the Centers for Disease Control and Prevention awarded HNF a multi-year grant to create a National CMT Resource Center, producing comprehensive resources and educational materials for patients, caregivers, and medical professionals. In 2007, HNF formed the Therapeutic Research In Accelerated Discovery (TRIAD) program, which continues to drive research progress today.

HNF board members and leadership gathered outdoors at a board retreat.

How research is steered

HNF's research strategy is guided by the TRIAD Council, a network of CMT thought leaders, experts, and consultants who review grant proposals, provide expert guidance, and assess project outcomes. It is distinct from the foundation's leadership and is described on its own page.

Learn about the TRIAD Council →

What this team is working toward

We will always be straight about where the science stands: there is no approved disease-modifying therapy for CMT yet. What a team is for is turning that fact into motion rather than resignation.

No cure is delivered by a board or a staff alone. It is assembled from many hands, every patient who is counted, every donor who steps up, every partner who commits, and it compounds. The leadership here exists to point that shared effort at the science most likely to reach patients, starting with the GRIN registry.

Connect with HNF

Want to reach the team, partner with us, or get involved? We would be glad to hear from you.

Read the foundation's full origin on our Our Story page.