The MLD Foundation is a 501(c)(3) non-profit US tax-exempt organization. We were formed in May 2001 to serve families throughout the world affected by metachromatic leukodystrophy (MLD), a terminal genetic disease.
Our slogan,"We C.A.R.E" reflects our culture of Compassion, Awareness, Research and Education.
Donations to the MLD Foundation are tax deductible and will be used to further activities in one of these four areas.
Medical & Scientific Advisory Board
The MLD Foundation's Medical & Scientific Advisory Board is our formal advisory resources to advise us on medical and scientific issues related to MLD. They represent the state of the art in research and clinical science. Many are well know experts in MLD, however, we have several experts in fields closely related to MLD to make sure we are in touch with related research and clinical work. We are proud to present our current Medical & Scientific Advisory Board:
Dr. Lawrence Charnas ... Neurologist ... His clinical specialties include neurogenetic and metabolic diseases of the nervous system with specific research in the clinical application of hematopoietic stem cell transplantation in the treatment of neurological diseases. ... Assistant Professor, Department of Pediatrics, Clinical Neuroscience Division, University of Minnesota
Dr. Timothy Cox ... Acting Director Metabolic Medicine Research Division, Professor of Medicine. Dr. Cox's focus is Lysosomal Diseases. ... Addenbrooke’s Cambridge University Hospital, UK.
Dr. Christine I. Dali ... Pediatric Neurologist ... Principal Investigator for the Phase I/IB Clinical Trials in Europe for Metazyme, an Enzyme Replacement Therapy for MLD. ... Rigshospitalet, Department of Clinical Genetics, University Hospital Copenhagen, Denmark.
Dr. Maria Escolar ... Neurodevelopmental pediatrician ... Director of the Neurodevelopmental Function in Rare Disorders program which longitudinally tracks neurological and functional changes in patients with rare diseases. ... FPG Child Development Institute, University of North Carolina, Chapel Hill.
Dr. Julie Hauer ... Pediatrician, Pediatric Palliative Care Specialist ... Dr. Hauer is the Director of the Pediatric Palliative Care Program at the University of Minnesota Children's Hospital, Fairview. She was a fellow at Children's Hospital Boston where she worked in the Dana Farber Cancer Institute (Pediatric Palliative Care). She brings great skill, perspective, and compassion to the families who are trying to maintain and improve the quality of life for their MLD loved one.
Dr. Maria Sessa ... Neurologist ... Dr. Sessa is working on the implementation of a clinical protocol for ex vivo gene therapy. ... San Raffaele Research Institute in Milano, Italy.
Dr. David A. Wenger ... Clinical Biochemical Genetics and Clinical Molecular Genetics ... Director of the Lysosomal Diseases Testing Laboratory, Jefferson Medical College, Pennsylvania.
Administrative Board
The MLD Foundation's Board represents a variety of experiences and perspectives from parents to doctors and includes several outside professionals to assure that the MLD Foundation remains focused and accountable for all of its philosophical and financial actions. The Board consists of 6 people:
Rob Teach ... Senior Vice President of US Bank, Commercial Lending
Lawrence Charnas, M.D., Ph.D. ... Neurologist ... Assistant Professor, Department of Pediatrics, Clinical Neuroscience Division, University of Minnesota
Wilson W. Smith III ... Creative Design Director, Nike
Christine Hoffmann ... The Hoffmann's daughter, Olivia, passed away in late 2010 from the late infantile form of MLD at age 8. Christine has been actively engaged with the MLD Foundation for a number of years. Locally in the Phoenix area, she is involved in several community projects including Ryan House.
Teryn Suhr, Executive Director ... MLD parent and co-founder of the MLD Foundation.
Dean Suhr, President & Board Chair ... MLD parent and co-founder of the MLD Foundation.
Charity Status
The MLD Foundation was formed on May 11, 2001 by filing with the state of Oregon (USA) as a non-profit charity organization. Our United States IRS 501(c)(3) non-profit tax exempt charity status was granted on October 24, 2003 retroactive to May 11, 2001. Frequently requested reference documents can be found here: