Kristie, a Cornell University graduate and retired Bank executive, 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 of Switzerland is a graduate of McGill University in Montreal. She was diagnosed with adult Refsum disease over 30 years ago, following a relatively short journey to an accurate diagnosis. She is one of two siblings affected in her family. After a long career in clinical trial management at Novartis Pharma, Susan is now retired. Despite the challenges of partial disability, she has remained professionally active through her leadership and advocacy work in the rare disease field.

Driven by the need to connect and empower those affected by Refsum disease, Susan founded the first online Refsum patient community on Yahoo! Groups. This pioneering platform enabled patients and families across the world to share experiences, access information, and find peer support at a time when very little was available. Susan is also a co-founder of the Global DARE Foundation, where she continues to advocate for improved diagnosis, treatment, and quality of life for individuals living with Refsum disease. Her work focuses on strengthening patient engagement, advancing research, and building a more connected and informed global community. She remains deeply committed to her vision of improving outcomes and quality of life for all people affected by Refsum disease.

Heidi Page of Maine is the Treasurer of the Global DARE Foundation. With over 20 years of experience as a senior leader at TD Bank, Heidi has successfully led large-scale projects within Risk Management. Heidi is deeply committed to community service, having contributed to various organizations throughout her career. Her leadership skills and passion for volunteerism have made her a valuable asset to the Global DARE Foundation since joining in 2022, where she supports the mission with her extensive background in both corporate and community roles.

Tali is the Chief Legal and Compliance Officer of a Pharma company specializing in commercialization of breakthrough therapies for rare and severe diseases in international markets, where she leads a global legal and compliance department which handles various business, legal and ethical matters. She also serves as the Chair of the Audit Committee of Beit Issie Shapiro, a non-profit organization and Israel's leading developer and provider of innovative therapies and services for children and adults across the entire range of disabilities. In 2023, at the age of 20, Tali's eldest son, Guy, was diagnosed with Refsum Disease following over three years where he was mistakenly diagnosed with another syndrome. While Guy is not suffering from any symptoms typical to Refsum (other than a short 4th Rt. metatarsal bone) he has osteoarticular changes and bone abnormalities. Tali and Guy volunteered to be a DARE Ambassador for Israel, and both are determined to expand the network of patients with Refsum Disease, medical professionals, and researchers with the aim to raise awareness and boost research and therapy.

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.

Kerstin Reichert is a board member of the Global DARE Foundation. She brings her personal experiences with Refsum Disease, which was only correctly diagnosed in 2022. As the chair of Refsum Deutschland e.V., she supports international collaboration and is committed to raising awareness of the disease in Germany and better connecting patients.

German:
Kerstin Reichert ist einfaches Vorstandsmitglied der Global DARE Foundation. Sie bringt ihre persönlichen Erfahrungen mit der Refsum-Erkrankung ein, die sie erst 2022 richtig diagnostiziert bekam. Als Vorsitzende von Refsum Deutschland e.V. unterstützt sie die internationale Zusammenarbeit und setzt sich dafür ein, die Krankheit in Deutschland bekannter zu machen und Patient*innen besser zu vernetzen.

Dr. Mark Tepper is a biotechnology entrepreneur and executive with more than 30 years of leadership experience across multinational pharmaceutical companies and venture-backed biotech startups. After a 15-year career in large Pharma leading R&D programs across multiple therapeutic areas, he became a serial entrepreneur, founding and leading biotech companies based on technologies emerging from academic medical centers. His expertise spans company formation, fundraising, R&D, commercialization strategy, licensing, and operational leadership.

Over the past two decades, Dr. Tepper has raised more than $200 million in capital, taken two companies public, and led a several successful acquisition. He founded Corbus Pharmaceuticals (NASDAQ: CRBP) and guided the company through its 2014 IPO. His ventures also include EuMentis Therapeutics and Primatope Therapeutics. Dr. Tepper currently leads Epoulosis Therapeutics, developing treatments for diabetic complications, and serves as a reviewer and co-chair on an NIH SBIR study section.

Nasheed graduated from the Massachusetts Institute of Technology with an SB in Brain & Cognitive Sciences and a Minor in French and from the Georgetown University School of Medicine with an MD, conducting neuroscience research at both. She then completed her neurology residency and neuromuscular medicine fellowship at the University of California, Los Angeles before joining the UCLA faculty. She co-founded the world’s first tele-polyneuropathy clinic and two multidisciplinary clinics for rare diseases. Nasheed was the Acting Chief of Neurology at the VA Greater Los Angeles Healthcare System during the COVID-19 pandemic. Afterwards, she completed the full-time MBA program at HEC Paris, specializing in strategy and inclusive and social business. Nasheed subsequently was named the Chief Marketing Officer of BIOSerenity, a Paris-based MedTech scale-up that designs neurodiagnostic solutions incorporating AI. Nasheed has been invited to speak at several international conferences, including TEDxHECParis 2023, at which she delivered her TEDx Talk.

Natalie is a healthcare administrator and board leader with over eight years of experience advancing operational excellence, governance at the national and international levels, and patient-centered strategy across pediatric, adult, and nonprofit healthcare settings. She currently works in healthcare administration, supporting complex clinical programs across craniofacial care, plastic surgery, dentistry, oral and maxillofacial surgery, neurology, and sports and spine medicine. Natalie brings expertise in finance, strategic planning, data analytics, fundraising, and organizational governance, and serves in multiple board leadership roles with national pediatric nonprofits and international adult neurology initiatives in South Africa. She holds an MBA in Healthcare Management and is pursuing doctoral studies in health administration. Natalie is deeply committed to ethical leadership, health equity, access to care, and sustainable healthcare systems, grounding her advocacy in both operational integrity and lived experience to drive long-term impact for individuals and families affected by rare diseases.