OH-8 Cruise In
September 26 @ 11:00 am - 3:00 pm
A Brother asked during a state meeting to make awareness of a disease his grandson (Jax) was recently diagnosed with called Sanfilippo. As a state we are doing just that and if we can raise a few dollars along the way then hey, why not!
We have planned a day for all to come. Details of the event are on the attached flyer. Date is 26 Sept 2026 at the Piqua OH VFW. If you can make it on a short notice, what a blessing, if not totally understand! Just do one solid and spread the word about this horrible disease! I’ve listed out some details on what Sanfilippo below. There is also a site called CureJax.org , if you want to learn about the family’s story. The more this disease is made aware of the better chance of getting funding for a cure and again, that’s what this message is all about AWARENESS!
Sanfilippo syndrome, or Mucopolysaccharidosis type III (MPS III), is a rare, fatal genetic brain disease often called “childhood dementia”. It stops the body from breaking down a sugar molecule called heparan sulfate, which builds up and destroys cells in the brain and nervous system. There is currently no cure.
Causes and Types
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- Caused by a flawed gene passed down from both parents (autosomal recessive).
- Divided into four main types (A, B, C, and D) based on which missing enzyme the body lacks.
- Type A is usually the most severe and fast-moving form.
Signs and Symptoms
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- Children look healthy at birth and grow normally for the first one to two years.
- Speech and developmental delays show up between ages two and six.
- Extreme hyperactivity, sleep problems, and behaviors similar to autism.
- Gradual loss of speech, movement, and mental skills.
- Most children pass away during their early teens
- OH-8 Event Downloadable Flyer