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 will advocate 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 Head of US Enterprise Data & Analytics.  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 and Ironman triathlete.  


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 therapeutic methods and ultimately a cure.   This led her to start the Global DARE Foundation in 2019.

Susan Kuranoff,  Secretary

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. 

Alan Gunzburg, Director

Alan grew up in Forest Hills, NY and attended the State University of New York at Buffalo to study history and anthropology. His first job out of college was in sales at the DataEase company in Trumbull, Connecticut, where he sold database software to companies all over the United States.   Alan moved from DataEase to QMS and eventually, he was hired by his biggest customer, Xerox Corporation, which would turn out to be Alan’s last job. In 2003, Alan was declared legally blind due to Retinitis Pigmentosa, and stopped working because he could no longer drive to visit his customers.  Shortly thereafter Alan started to advocate for the Blind and found himself involved in policy decisions.  He  joined the VSB as a board member, where he worked to help people understand the needs of the blind. In 2016 Alan discovered that Refsum Disease was the cause of his vision and hearing loss.  Alan will now bring his long time advocacy and board experience as a Director of Global DARE Foundation.  

Kim Bruce,  Director

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.  

Contact us

P.O.Box 865

Windham, Maine 04062

United States

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EIN: 84-3343395

501(c)(3) IRS Approval:

This website is not designed to diagnose, advise or provide medical opinions, treatment or services. It is for general knowledge purposes only. Please consult a licensed medical professional with all questions and concerns regarding a medical condition. 

© 2020 Global DARE Foundation