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Meet Global DARE Foundation

The Global DARE foundation is a global community of patients, caregivers, healthcare professionals, and supporters, dedicated to improving the lives of those affected by Refsum Disease.

Many around the world face a lengthy diagnostic journey for years while losing their quality of life. The Global DARE Foundation is advocating for change.

Our goal is to support research, education initiatives, awareness campaigns, and advocacy.

Board of Directors

Our Board of Directors are part of the Refsum Disease Community and are highly motivated to do whatever it takes to find better therapeutic methods and ultimately a cure.  We are fighting with disease on a day to day basis.  This gives every aspect  of what we do more purpose and meaning as it directly affects as well as inspires us!

Kristie DeMarco, President & CEO

Kristie, a Cornell University graduate and Global Head of AML Operations at TD Bank, embodies resilience and leadership. With over 25 years of experience, she excels in spearheading multi-million dollar initiatives and guiding extensive teams. Beyond her corporate role, Kristie is a devoted wife, mother of four, and a passionate athlete, known for her love of open water swimming and her achievements as an Ironman competitor.

In 2017, Kristie's journey took an unexpected turn when she was diagnosed with Refsum Disease after two years of medical uncertainty. This revelation ignited her resolve to advocate for improved therapies and ultimately a cure. Building on her Ironman spirit, Kristie launched a new race—the race to find a cure. In 2019, she founded the Global DARE Foundation, dedicated to accelerating research for this rare disorder. Kristie's story exemplifies resilience, determination, and the belief that anything is possible.

Susan Kuranoff, Vice President

Susan Kuranoff of Switzerland is a graduate of McGill University, Montreal. Over 20 years ago she was diagnosed with Refsum Disease after a relatively short journey to an accurate diagnosis. She is one of 2 children impacted in her family. Despite partial disability, she enjoys a career in clinical trial management at Novartis Pharma. With the purpose of uniting Refsum patients and their families from far flung places around the world, Susan founded the first online Refsum community on Yahoo! Groups to enable those impacted with the condition to learn about the disease, seek support and connect with others.

Passionate about advocating for Refsum and through her work with the Foundation, Susan is committed to her vision of a better quality of life for all diagnosed with Refsum.

John DeMarco, Treasurer

John DeMarco, of Maine, is the Treasurer of the Global DARE Foundation. John received his Bachelor of Science degree from King's College in Wilkes-Barre PA. He has been happily married to Kristie DeMarco for over 25 years and they enjoy four wonderful children together. John’s business background is in hospitality management. John has a long history of commitment to community service as well as previous board experience.

Marissa Rossouw, Secretary

Marissa Rossouw is an international Financial Services and Banking professional, living and working in South Africa, the Netherlands and now the United States. She has more than 15 years of experience working in house and advising international clients in Corporate Governance and Corporate Law. Most recently, she has held strategic roles within a British Investment Bank with a focus on creation of robust business frameworks within Europe. Marissa is a qualified Attorney with the High Court of South Africa, with a specialized focus in Corporate and Property Law. She was born and raised in South Africa and obtained her Law Degree from the University of Stellenbosch in South Africa. Marissa recently relocated to Maine with her husband. She is an avid swimmer and also serves on the Governance Committee of Maine Swimming.

Mark Liquorish, Director

Mark Liquorish lives in the UK, diagnosed with Refsums 40 years ago, spent career working in health care as a nurse and a Manager for the NHS. Now retired, despite disabilities still able to support the community and I am a Rotarian and Board member of a successful educational establishment.

He is strongly committed improving the quality of lives of patients with Refsums disease. Also helping raise the profile with clinicians and allied health professionals to ensure we get early diagnosis and treatment for patients.

Darrell Gunter, Director

Darrell, an experienced digital publishing executive, has been at the forefront of significant information industry initiatives, i.e., Factiva, ScienceDirect, Scopus,, ReviewerFinder, Underline, and Ripeta. Gunter Media Group, Inc. has advised many CEOs from startups to the very most prominent publishers in his consulting practice.

He is a published author of the edited volume, "Transforming Scholarly Research with Blockchain Technologies and AI." His other publications can be accessed on his ORCID profile.

Darrell has served on many non-profit boards and he is very proud to join the Global DARE Foundation Board.

He is a graduate of Seton Hall University's W. Paul Stillman School of Business (BS Business Administration- Marketing) and Lake Forest Graduate School of Management (MBA). His column titled "The Innovator's Saga" appears in The Against The Grain publication. He is an adjunct professor in the W. Paul Stillman School of Business. His radio program "Leadership with Darrell W Gunter," in its 12th season, airs 8:00 am Saturday on WSOU HD 89.5 FM / His previous shows are available on his iTunes Podcast.

Donald Samulack, Director

Donald graduated from McGill University (Montreal, Canada) with a PhD in medical physiology and specialization in the neurosciences (credited with the first primate skin and hand transplants). Including his academic training, Dr. Samulack has spent over 40 years in various roles within academia, marketing and market research, and scholarly communications spaces across the academic, publishing, and pharmaceutical sectors, worldwide. As a thought leader, provocative speaker, change influencer, and with working knowledge of North American, European, Latin American, and Asian academic, pharmaceutical, and scholarly publishing markets, he has been is a major player in shaping perceptions, defining workflows, and delivering programs surrounding the publication, interpretation, and communication of research findings. He has a passion for networking and developing new business models to accomplish meaningful and persistent change, especially if it accelerates the research discovery and the communication of science.

He currently lives in the Philadelphia area, with his wife and son, and enjoys spending time hiking and kayaking, but loves to talk about his many scuba diving adventures!

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