Our Mission is to raise awareness and funds for Sanfilippo research that will lead to a cure, and to instill and sustain hope for families impacted by the disease.
Our lives became complete on March 1, 2012 when our beautiful baby girl, Reagan, came into this world. Two years later our world was then turned upside down when Reagan was diagnosed with Sanfilippo Syndrome, otherwise known as Mucopolysaccharidosis IIIA (MPS IIIA), a rare and terminal genetic disease that affects children. It has no cure or treatment. We were told that she will slowly lose all the skills she has gained, including the ability to talk, walk, and even swallow, eventually leading to death in the early teen years. Can you imagine being told that you were basically going to have to watch your child slowly die before your eyes? We were devastated!
Then we found hope- Reagan's Hope. Promising research is occurring around the world, some of it in our own hometown of Columbus, Ohio where researchers at Nationwide Children's Hospital have created a gene therapy treatment that could cure this awful disease. We are hopeful this therapy will get to human clinical trial soon. But we have very limited time. Over the next couple of years, irreversible damage to Reagan's brain and body will result in loss of mental function, restlessness, sleeplessness, difficult behaviors, and losing the ability to talk by school age. This is true for any child diagnosed with Sanfilippo Syndrome. We are in a race against time to stop this awful disease. Reagan's Hope: A Cure for Sanfilippo, can not be accomplished without your help. Please help be part of the cure!
Donate on our GoFundMe page!