Our mission started in 2014 when our daughter Reagan was diagnosed with MPS III, otherwise known as Sanfilippo Syndrome. Since that time we have been raising money to try and put an end to this awful disease. We have granted over $100,000 to help with an on-going gene therapy clinical trial happening in Columbus Ohio at Nationwide Children's Hospital. Research continues around the world, including the start of several other clinical trials.
Our mission will continue until ALL children with Sanfilippo Syndrome have some form of cure or treatment.
See below for our original story from 2014:
Our lives became complete on March 1, 2012 when our beautiful baby girl, Reagan, came into this world. Today, she is a happy, energetic two year old who loves to dance and play.
Recently, our world has been 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. The clinical trial will be ready soon but we need your help. Please help us raise awareness and funds for 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.
Reagan’s Hope is recognized as a nonprofit organization by the IRS.
IRS Code: Section 501(c)(3)
Tax Identification Number: 46-5572090
Find out more at www.reaganshope.org or www.facebook.com/reaganshope
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