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 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.

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.

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.

Jasper Tolarba, Director

Jasper currently lives in South Jersey, USA with his family. He is the inaugural graduate of Yale University’s Doctor of Nursing Practice (DNP) program in 2015. He has been a registered nurse for over 25 years and held varied and progressive roles in clinical, academic, and hospital settings. With his nursing, education, and leadership background, he hopes to apply his knowledge and skills to help the organization achieve and transcend its mission of improving the quality of lives of people affected by Refsum disease. As a US Fulbright research scholar in the Middle East and a nurse with international practice experience, he has built a global network of nurse leaders and clinicians who could advocate for patients and bring awareness to the public about this genetic disease.

Mohammad Al Otaibi, Director

Mohammad brings over a decade of risk, audit, and process improvement experience in the non-profit and for-profit sectors. In his roles as a consultant with the Big Four accounting firms Deloitte and EY, he supported organizations in responding to key threats and seizing on opportunities. He also led projects to transform internal controls and compliance activities to achieve cost savings, and developed business continuity programs to improve organizational resilience and response in times of crisis. In his current position with The Legal Aid Society, he heads the risk management and internal audit departments.

Mohammad joined the Board of Directors intends to contribute to the mission of the Global DARE Foundation by using his long professional experience to help the Foundation in navigating the myriad of risks facing organization’s in today’s business environment.

Christopher Metzler, Director

Dr. Christopher Metzler is the newly named majority shareholder in “Living Beyond The Realm”, a global lifestyle brand. He is a Strategic Business media savvy and academic professional with expertise and talent to address today’s organizational challenges of attaining a diverse workplace, engaging employee retention, strategically maximizing diversity and inclusion, customer satisfaction, employee engagement, organizational productivity, and employer accessible environments. Highly experienced SME in Diversity and Inclusion in both non-profit and for profit enterprises globally. Respected Life Scientist in the Bio medical, chemical and association space. He is Respected for solutions-based intervention, sound judgement, strategic thinking, high standards, crisis communication mastery, poised discipline, exceptional C-Suite navigation and leadership qualities. His experience spans state, local and international governments, educational institutions, corporate and non-profit. Highly networked globally.

He is delighted to join the Global DARE Foundation board. As a trustee of his homeless mission, he has seen the impact of Adult Refsum disease firsthand.

Reenita Malhotra Hora, Director

Reenita Malhotra Hora is the CEO of Chapter by Episode Productions. With multiple years of experience in media, entertainment, communications, tech/innovation, and wellness industries in the U.S. and Asia, she grows organizations ranging from early-stage startups to mid-size businesses through storytelling, creative marketing, and business strategy. She has served as Head of Marketing at SRI International, VP of Content at hibooks/Otto Radio, and producer/presenter for Bloomberg, and she was an award-winning host for RTHK Radio 3 in Hong Kong. Reenita has written seven books – five non-fiction and two fiction. Her background as an Ayurveda Clinician has led her to teach clinical and CME programs in Asia, Europe, and the U.S. She is a limited partner in the How Women Invest fund, which specifically invests in women-owned companies. Reenita joined the Global DARE foundation because she is committed to building awareness about Refsum disease.