Dean Suhr
President & Co-Founder, MLD Foundation
Dean Suhr is President and co-founder of the MLD Foundation, which he and his wife founded after two of their three children were diagnosed with metachromatic leukodystrophy (MLD), a rare inherited neurodegenerative disease. For more than 25 years, Dean’s work has spanned direct patient and family support, research collaboration, public policy, therapy development, newborn screening, genomic medicine, and access and reimbursement. That work is grounded in the belief that scientific progress and sound policy must ultimately translate into meaningful improvements in the lives of patients and families.
Through the MLD Foundation, Dean has worked closely with families throughout the world while collaborating with researchers, clinicians, biopharmaceutical companies, regulators, policymakers, payers, and other advocacy organizations. Maintaining substantial direct contact with affected families has remained central to the Foundation’s work and provides an important patient and caregiver perspective to his policy and systems-level activities.
Dean became involved in MLD gene therapy during its early research stages in 2005 and helped nurture its progress from bench research through clinical development, regulatory review and approval, and subsequent access and reimbursement discussions. His experience includes engagement with FDA and EMA regulatory processes and with health technology and value assessment organizations, including NICE and ICER. This work has given him a particular interest in how clinical evidence, patient experience, health economics, uncertainty, durability of benefit, and the realities of ultra-rare disease should be considered when assessing the value of transformative and potentially one-time therapies.
For nearly 20 years, Dean has also been deeply engaged in newborn screening policy and implementation. His work has included sustained engagement with the federal Recommended Uniform Screening Panel (RUSP) process and HHS/HRSA advisory structures; state policy and implementation; development of screening assays and pilot studies; and efforts to improve the broader newborn screening ecosystem. He founded and facilitated six years of multi-stakeholder RUSP Roundtables and has convened MLD newborn screening summits, working groups, and expert advisors to help move MLD from assay development and pilot screening through RUSP consideration and toward state implementation.
His broader rare disease policy work has included federal and state legislation, CMS and reimbursement policy, research infrastructure, patient registries, and collaboration with NIH-funded rare disease networks. He was a founding participant in what is now the Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) and has worked for more than two decades with the NIH-supported Lysosomal Disease Network.
Dean is particularly interested in the rapidly evolving intersection of genomic medicine, earlier diagnosis, transformative therapies, evidence generation, value assessment, and sustainable access. He brings to these discussions the perspective of a parent and longtime patient advocate as well as experience in technology, business, policy, and systems development. His focus is on ensuring that patient and caregiver experience is incorporated meaningfully—not simply symbolically—into research, regulatory, policy, value, reimbursement, and access decisions.
