Our son Jonah was diagnosed with this horrific disease on May 7th, 2010.  It all started with a trip to our new pediatrician for Jonah's one-year well visit.  As a new mother I had all kinds of questions to ask about his diet, sleep habits and education. Those questions never got asked.  Our new doctor stopped me short when he pointed out that Jonah's head size was "off the charts" and that I needed to get an MRI.  It took us five blissful months to get that MRI, due to random cancellations. We spent a magical holiday season with friends and family, laughing and playing while Jonah's body harbored a deadly secret.

We finally got his MRI done at the end of March, and the neurologist called us in to go over the results.  The second I walked in and saw that the doctor had invited a medical student to join us, I knew something was wrong.  They found something and it pointed towards a rare genetic disease called Mucopolysaccharidosis, or MPS. We were referred to a geneticist, she had us do a urine sample for Jonah. The urine sample confirmed the disease MPS and pinpointed that it was Sanfilippo, one of the seven forms of MPS. We next did a blood test, which told us the type of Sanfilippo.  Jonah is subtype C, which is medically considered the milder form of the four types, because it takes longer to progress.  However, it is incurable, and at some point in the child's life the disease always runs its course.  We're going to do everything in our power to keep that from happening.

Our mission is to raise awareness for the Sanfilippo disease and its four subtypes: A, B, C, and D. Ultimately, we will find a cure for our son, others like him and the future generation. We strive to educate everyone who crosses our path on the symptoms of Sanfilippo, and encourage our friends and family to do the same. The foundation will focus on educating those individuals on the front lines to think outside of the box. There are families out in the world right now that are struggling to put a name to their child's disease; many children with Sanfilippo go undiagnosed for years.  We need to find these children and get them the help that they deserve, then work together to find a cure.

 Jonah’s Just Begun - Foundation to Cure Sanfilippo Inc. is a family-run organization; JJB’s board of directors are all parents with Sanfilippo Type C children. Our funding focus is on supporting research for Sanfilippo Type C.  With the help of our sister organizations and peer review board we have set the stage for finding a cure for our kids: JJB has a team of researchers from around the world collaborating on different types of treatments. The initial steps for a first-ever Type C mouse model and Natural History Study have been taken. Our directors have been very busy laying the ground work that will entice a drug company to take our potential treatments to clinical trial.  Now all we have to do is keep our researchers funded.