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.  She is our everything!   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 and  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.  Researchers at Nationwide Children's Hospital in Columbus, Ohio, our very own hometown, have created a gene therapy treatment that could cure our daughter in time to save her life so that she remains the happy and seemingly healthy child she is today.  But we have very limited time, as she's already showing early signs of the disease.  Over the next couple of years, irreversible damage to her brain and body will result in loss of mental function, restlessness, sleeplessness, difficult behaviors, and losing the ability to talk by school age.  Clinical trials at Nationwide Children’s Hospital will be ready within the year, but not without funding.  Please help us raise awareness and funds for these clinical trials that could save our daughter's life and other children like her.  We are in a race against time to stop this awful disease.  Reagan's Hope: A Cure for Sanfilippo, can't be accomplished without your help.  Please help be part of the cure!

 

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