Leadership

Isabelle Lousada has been the driving force behind ARC, building successful collaborations and programs across the sectors to advance the science and understanding of the amyloidosis diseases.

Isabelle was diagnosed with AL amyloidosis, and was one of the first patients to successfully undergo a stem cell transplant. For the past twenty years she has been committed to empowering other patients while serving on several boards and committees, speaking at leadership meetings and key events to encourage research, increase access, and support the critical and unmet needs of amyloidosis patients.

Kristen has over ten years of clinical operations experience within the pharmaceutical industry. She has a wealth of experience in managing complex global clinical trials for novel treatments of rare diseases. Kristen is building and overseeing the ARC’s clinical research program and manages a prioritized portfolio of vital research.

Laura leads the development and communications team. She brings over 25 years of non-profit experience, and is highly mission driven. She specializes in building Development teams and systems for fundraising success.

Grace holds a Master’s Degree in Public Administration and Nonprofit Management, and has over seven years of experience in both the public and private sectors. Prior to ARC, she supported fundraising and grant management as well as program management at the Office of Financial Empowerment (OFE) at Mayor’s Office of Workforce Development for the City of Boston; and also had oversight for business operations for a local biotech startup company.

With over 15 years of operations and finance leadership experience in mission-driven organizations, Kevin’s passion for nonprofit operations provides strong support for ARC’s mission and continued growth. Kevin has a personal connection to Amyloidosis, having lost his father to AL Amyloidosis in 2015.

Phaedra brings over twenty years of research and leadership experience in global Life Sciences organizations. Her background includes the use of multiple data sources (administrative claims, medical records, electronic devices, patient and provider surveys, registries, qualitative research) to address real-world evidence needs across a variety of health conditions, with a focus on capturing the patient’s voice. Phaedra helps to drive the development, growth, and implementation of ARC’s research activities in partnership with patients and stakeholders.

Kaye has a Master’s Degree in Social Work and over 30 years of experience in non-profit leadership. In previous roles Kaye led nationwide teams focused on the proactive and strategic development of relationships with healthcare providers. She also brings experience in developing and implementing programs for people living with chronic disease. Kaye leads the Community Alliances and Stakeholder Engagement department focused on community programs and outreach.