The Barth Syndrome Foundation's Board of Directors is responsible for overseeing the mission and purpose of the organization. Its duties include participation in strategic planning and making policy decisions, then securing the financing of them and the monitoring of their execution. Members must be willing to attend the requisite meetings, follow through on commitments, and participate fully in the decision-making process. The board also presents the organization´s image to the community and solicits its support in achieving BSF´s goals. Members of the BSF Board of Directors serve three-year terms. For all correspondence, including information, please contact us.
Jonathan Stokes
Jonathan Stokes, MBA, is a Senior Director in Patient-Centered Outcomes Research overseeing neurology, ophthalmology, and specialty therapeutic areas at AbbVie. With 18 years of experience conducting patient-centered research and generating patient experience data, Jon has a devoted interest in understanding and integrating the patient voice in drug development. He has extensive experience in designing, evaluating, and implementing clinical outcome assessments (COA) to evaluate treatment benefit and has made significant contributions to major product approvals and launches, as well as the development of multiple novel patient-reported outcome (PRO) instruments for use in clinical trials and real-world practice. Through his work at Adelphi Values, Jon was a lead on the development of a patient-centered outcome tool for Barth syndrome and has continued to work extensively with our affected adult population, earning their trust and confidence as someone committed to the people and mission. Jon holds a MBA from Northeastern University.
