The ARC team is deeply committed to amyloidosis and works tirelessly to deliver our programs which are fully integrated across the entire research and development continuum and into the clinic. These closely align with our mission, and focus on the areas that are most important, can best be delivered by ARC and are most likely to have the biggest impact on patients, short- and long-term.
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.
Sarah Cairns-Smith is a Senior Advisor at The Boston Consulting Group (BCG) where she was a Senior Partner and Managing Director. She was also a Harvard University Advanced Leadership Initiative Fellow in 2019. At BCG she was a leader in the social impact, organization and health care global practices and led BCG’s Scientist Network, a group of over 500 PhD/MDs. She specialized in innovation-related consulting with a strong emphasis on R&D and launch stage projects and novel technologies. Her technology interests span biotech and biopharma through digital. Sarah has consulted across the private, public and social sectors including to several of the world’s major foundations.
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.
As the Executive Director of Strategic Partnerships, Vanessa works with a variety of stakeholders to build collaborative relationships and innovative initiatives that meaningfully benefit the amyloidosis community. Vanessa brings over 15 years of experience centering cross-sector collaboration in pursuit of health and social equity to her position at ARC. She currently is an appointed member of the Patient-Centered Outcomes Research Institute (PCORI) Advisory Panel on Rare Diseases and prior to joining ARC was the inaugural Director of Research at the National Organization for Rare Disorders (NORD).
As the Director of Operations, Grace oversees ARC’s day-to-day operating procedures of program management, finance and accounting, human resources, and administration. Grace holds a Master of Public Administration in Nonprofits 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.
Steven brings over ten years of experience in nonprofit development operations working for and with various organizations including the National Kidney Foundation, Save the Children, World Vision, Plan International and others. Steven will steward and build upon ARC’s robust diverse network of supporters and stakeholders while strengthening its brand, and growing its financial resources.
Senior Partner and Managing Director, Boston Consulting Group
Founder and CEO, Amyloidosis Research Consortium
Facilitator, Northern California Amyloidosis Support Group
CEO, Patient Discovery
Director, Transfusion Services; Director, John C. Davis Myeloma and Amyloid Program at Tufts Medical Center; Professor, Tufts University School of Medicine
Director, Center for Research and Treatment of Systemic Amyloidosis, and of the Biotechnology Research Laboratories, Scientific Institute Policlinico San Matteo, University of Pavia, Italy
Tufts Medical Center
New York-Presbyterian Hospital/Columbia University Medical Center
University of Pavia
The Scripps Research Institute
Boston Medical Center
Chairman, Amyloidosis Research Consortium-UK
Royal Free Hospital