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
Kristie graduated from Cornell University and currently works at TD Bank as the Global Head of AML Operations. She is a self-motivated, analytical problem solver with 25+ years of success in delivering multi-million dollar initiatives while providing comprehensive leadership to large scale teams. Along with being a leader at TD, Kristie is a wife, mom of 4 children and an athlete. She is an avid open water swimmer.
In 2017 Kristie's health started to deteriorate and after two years of searching for answers she was diagnosed with Refsum disease. Now she is on a mission to find better therapies and ultimately a cure. This led her to establish the Global DARE Foundation in 2019.
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.
Kim Bruce, Secretary
Kim Bruce, of Maine, currently works at IDEXX Laboratories as a Sales & Project Coordinator. She is a self-motivated, organized project coordinator with 12+ years of success in coordinating a variety of projects. Along with being a leader at IDEXX, Kim is a wife and mom of 2 grown children. She is the sister of Kristie and wants to support the efforts to improve the quality of life for Refsum patients.
Marissa Rossouw, Director
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.
Zahra Dhanani, Director
Zahra Dhanani of Toronto (Markham), Ontario, Canada currently works at TD Bank as a Senior Manager in Data and Analytics with a focus on Cloud Program Delivery. She is a problem solver, critical thinker and results driven individual. She is an avid volunteer and often says volunteering is in her DNA. Her current focus is on improving the quality of life of individuals with genetic diseases including Refsum.
Darrell Gunter, Director
Darrell, an experienced digital publishing executive, has been at the forefront of significant information industry initiatives, i.e., Factiva, ScienceDirect, Scopus, BiomedExperts.com, 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 / WSOU.net. His previous shows are available on his iTunes Podcast.
Peter Armstrong, Director
Peter is an inclusive content strategy leader who mixes his superior writing, creativity and passion for technology to break barriers and surpass business goals by humanizing end user experiences.
Prior to joining TD as an Inclusion and Diversity Communications and Colleague Experience Manager, Peter became an advocate for parasport, disability inclusion and accessibility while leading digital content teams at Accessible Media Inc., the Toronto 2017 Invictus Games and the Toronto 2015 Pan Am/Parapan Am Games.
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!