I am a mom with a daughter that has Morquio. We created The Carol Ann Foundation, a 501(c)3, to help other families with Morquio. Together with Dr. Shunji Tomatsu we created a database of over 400 patients worldwide. Dr. Shunji Tomatsu is our Medical Advisor as well as our Morquio researcher. We raise funds to help with education and research. Helping families understand the disease and knowing what types of doctors their child will need on a regular basis and informed about the types of surgeries they may need to have once the diagnosis has been established.
The Carol Ann Foundation is a 501c3 non-profit organization dedicated to seek out people who have Morquio in order to provide a mutual aid network; act as an advocate between patients, physicians and scientists; compile medical information into a database; and pursue funding for education, families and research.
Morquio Type A, also known as Morquio Syndrome or MPS IVA, is one of the Mucopolysacchride Disorders. Morquio is a progressive disorder arresting growth and causing severe bone disease in young children. While there is no known cure to treat the bone aspect, there is Enzyme Replacement Therapy (ERT) treatment is available for help with the respiratory system, recently approved by the FDA, through Biomarin. Our Medical Advisor and Clinical researcher, Dr. Shunji Tomatsu. is currently working on a treatment to help with the bone problem.