Good Morning Grand Rapids!

This is a special message today to help raise awareness for rare diseases, and specifically, Hunter’s Syndrome/MPS.

Our good friends in Grand Rapids, have two boys that are afflicted with this, and they’re holding a virtual 5k to help raise support and awareness.

If you’re free on March 29th, join us for a very informal, in-person meet-up and 5k walk/run in Caledonia! Read more and sign up here!

Did you know that there are over 8 BILLION people in the world?

Sawyer and Daxton are part of a community just the size of about 2,000.

2 thousand out of 8 BILLION. This is RARE.

These individuals have Hunter syndrome. A lysosomal storage disorder that is progressive and terminal. Their life expectancy is between 10 and 20 years. It is multi systemically effecting and there is no cure.

The current treatment for Hunter syndrome is a weekly infusion that gives an artificial version of the enzyme that their body is missing. A crucial part of the body that is responsible for recycling and riding the body of cellular waste. This treatment unfortunately dose not treat the neurological effects of the disease.

There are two new treatments currently in clinical trial and on track for FDA approval. These treatments do treat the neurological effects. Sawyer and Daxton were fortunate enough to get into one of those clinical trials in April of 2021. Though Sawyer still suffered some disease progression, both boys are doing impressively well and we are so very VERY grateful.

The hard is not over and still exists. And will continue to be for forever. This treatment they receive is not a cure and only time will tell how well it really is serving them in the long run.

We still advocate, still fight, every single day.

To learn more visit projectalive.org