Strengthan Foundation
Nonprofit Organization Management - Miami, Florida, United States
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Strengthan Foundation Details
The Strengthan Foundation, created in honor of Ethan, advocates and funds biomedical research to cure Multiple Sulfatase Deficiency (MSD) and avails its research to cure other lysosomal storage diseases.Multiple Sulfatase Deficiency (MSD) is a rare, fatal, lysosomal storage disease that affects the entire body. MSD is caused by either the absence of or errors within the SUMF1 gene. Over time, cellular waste builds up and is deposited throughout the body in multiple systems. Accumulation of waste products in the brain leads to developmental delay and loss of motor and communication skills. Children are typically without any symptoms at birth, but depending on their genetic mutation, signs of MSD can begin either soon after children are born or later on in the child's life. Diagnosis of the disease is very difficult, as there are less than 100 known cases of MSD throughout the world, and there are approximately 20 known cases in the United States. Children are often initially diagnosed with developmental delay and frequent ear infections before receiving a diagnosis of MSD. Children with MSD rarely survive past their 10th birthday, as their entire body shuts down due to a buildup of waste and loss of critical function.Currently, there is no treatment or cure for MSD. Various mutations of the SUMF1 gene are known to be the cause of MSD, and the knowledge of these specific gene mutations allows researchers and doctors to move forward to find a treatment and cure for MSD. Gene therapy of the SUMF1 gene could help slow the progression of the disease, and possibly deliver a cure for children diagnosed with MSD. The Strengthan Foundation and The United MSD Foundation is currently working with partner organizations, researchers, and doctors from all over the world to fund the first-ever clinical trial, which will help the foundation's mission to cure MSD and other lysosomal diseases.
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