Amber Olsen's Contact Details

Amber Olsen's Company Details

CureMSD

Ocean Springs, MS, US • 5 - 9 Employees
Non-Profit

Our mission is simple, yet powerful: To cure Multiple Sulfatase Deficiency.Multiple Sulfatase Deficiency (MSD) is a rare genetic, fatal disease that affects children in their entire body. With MSD, the body does not break down and filter out the natural cellular waste that occurs in everyday cell functions. Children are typically without any symptoms at birth, but depending on their genetic mutation, signs of MSD can begin either soon after birth or later on in the child's life. Diagnosis of the disease is very difficult, and there are less than 100 known cases of MSD throughout the world, approximately 20 of those cases in the United States. 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 available 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 and find a treatment and cure. Gene therapy could help slow the progression of the disease, and possibly deliver a cure for children diagnosed with MSD. 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. Additional initiatives include the development of a patient registry and advocating for newborn screening across the United States.The effects of MSD are devastating, on both the children with the disease, and their families who love and care for them. The United MSD Foundation envisions a world where an MSD diagnosis is no longer a death sentence, and that children with this disease have a chance to live healthy and productive lives.