With the passing of Act for ALS the Decker family is hopeful for what is to come in the new year. With a disease that has no boundaries this is a very big deal.

With the crushing news of the FDA declining the drug NurOwn, the Deckers are still hopeful! Even though NurOwn shows tons of promise for the treatment of ALS, this was devastatingly not enough for the FDA to approve it. Tyler is in good spirits and is hopeful for the future.

We’re thankful for our friends and family who make up Tyler’s Tribe! Tyler, Colleen, Albert, Michael, and Meghan would all like to express their gratitude to everyone for the countless prayers, messages of hope, and overwhelming generosity.

Last week we received confirmation—from the third neurologist we consulted—that Tyler does in fact have ALS. This is definitely not the news we wanted to hear, but now that we know with certainty what we are facing, we can, in a sense, move forward with our plan for Tyler’s treatment and dive head first into bringing awareness.

On July 15th, 2020, the neurologist ran an electromyogram that confirmed our greatest fear, and in that moment our world stopped. At the age of 26, our brother Tyler was diagnosed with ALS, also known as Lou Gehrig’s Disease.