What is MLD?
MLD (metachromatic leukodystrophy) is an inherited metabolic disorder that appears in early childhood and results in the progressive demyelination (deterioration) of a child’s brain. This results in a slow progression of various debilitating symptoms from gross motor damage (ability to walk and move), respiratory failure, and seizures to blindness and loss of mental capacity and finally to death.
Learn more on the MLD Foundation website
Who will benefit from the 5k run and the coffee crawl?
All proceeds from the TASTE OF GREECE partnership with CHLOE’S FIGHT 5k Family Run/Walk will go directly to the Minnesota Medical Foundation will be dedicated to Dr Paul Orchard and Dr Jakub Tolar, M.D., Ph.D.
Dr. Orchard and his colleagues at the University of Minnesota are working on ways to deliver more of the needed enzyme to the nerves, including those in the brain. In the laboratory, new approaches will be tested to provide more cells to the places they are needed, and to do so faster than is otherwise possible. If this can be accomplished, it may provide options for these infants with MLD not previously available. In addition, the information learned with this research can be applied to other diseases like MLD that affect myelin. Through these studies, we may provide hope to patients and their families, where no treatments are currently available.
Dr Jakub Tolar is at the forefront of blood and marrow transplantation for bone marrow failure and metabolic disorders. His research focuses on the use of bone marrow derived stem cells for correcting genetic diseases and improving the outcomes for blood and marrow transplant patients. Tolar’s research is also investigating novel gene and cellular therapy for organs, such as heart, brain and bone, that are resistant to correction with bone marrow transplantation. Most recently, he is recognized for his work in using a blood and marrow transplant of stem cells to treat severe forms of a rare skin disease called epidermolysis bullosa, or EB.