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, 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.

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.

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!

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.