Support Joey's Fight Against NEDAMSS

Hello,

We are raising funds for our son Joseph. Joseph was diagnosed with a rare genetic condition called NEDAMSS last year. NEDAMSS is a neurodegenerative disease in which people progressively lose all abilities. There is no cure, no treatments, and it is currently not considered survivable.

In an effort to save his life, we are working with researchers and companies to discover experimental treatments.

This summer, as a family, we provided the funds for an international grant, to make sure that a critical NEDAMSS gene therapy initiative remained fully staffed.

This fall, we are working with a biotech company that will use advanced AI to match Joseph's genetic make-up to currently approved FDA drugs for repurposing to treat his condition.

Obviously, these endeavors are outside of what traditional insurance will cover. This gofundme will help us defray some the costs we've incurred.

Anything you can give will go directly to these two large expenses: directly help Joey, and others with NEDAMSS as well.

If you've met Joey, you know that he is outgoing, happy, energetic, and loves to dance: we need to do everything we can to keep him that way. This disease is characterized by a sudden "regression" onset, so we don't know how much time we have. This is why we're being aggressive now.

We appreciate you and any support you can offer. With the help of friends and family we'll see Joey through this difficult disease.