Dean Suhr | President and co-Founder
MLD Foundation

President and co-founder of MLD Foundation in 2001.  Our mission ... We C.A.R.E.® ... facilitating Compassion for families, increasing Awareness, influencing & funding Research, and promoting Education for metachromatic leukodystrophy, a very rare terminal genetic neuro-metabolic lysosomal disease where over half the cases affect infants. After EMA approval in 2021 of an MLD gene therapy, a NICE acceptance, and being an expert reviewer for the 2023 ICER review, in March 2024 Lenmeldy™ was approved by the FDA.  Our current focus is improving access and reimbursement, particularly MEDICAID access across state lines and implementing Newborn Screening. MLD Foundation, on behalf of the MLD community, will submit a US RUSP Nomination by mid-2024, and we will lead the way for state-by-state MLD NBS implementation. Amidst these significant initiatives, we remain steadfast in our mission. We are in the process of migrating our MLD registry to a new platform and have initiated a project to reduce the percentage of VUS results from MLD sequencing. This will provide additional accuracy and clarity to those seeking a diagnostic confirmation, whether at birth or later in life, furthering our commitment to supporting families affected by MLD and enabling their access to life-saving therapy.