2022 - HOPE

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.

We had an extremely successful Luau back in November that raised over $20,000! We are so thankful to the people who helped make this event happen, especially Nino and John, we could not have done it without you both! For those of you who do not know, Tyler went to the University of Hawaii - Manoa and he loves all things island life. This Luau was inspired by his love of the island from the food to the music to our hula girl. We spent a lovely afternoon listening to island vibes and eating spam musubi.

In the coming year we have a lot to be excited for! We have the 2nd annual Tyler’s Tribe Golf Tournament happening on June 23rd at San Juan Hills Golf Club. More details on this event to follow. But what we are most excited for is what the Act for ALS bill brings to the the ALS community. this bill does the following:

-Act for ALS is an expanded access grant program that funds research and provides access to promising investigational treatment to ALS patients who are not eligible for clinical trials

-this will be the first federal effort explicitly charged with speeding the development and approval of therapies for ALS and other rare neurodegenerative diseases

-a rare disease grant program at the FDA that will fund research on and development of interventions to prevent, diagnose, treat or cure ALS and other rare neurodegenerative diseases. (all of this information can be viewed on iamals.org)

This bill brings hope to the ALS community for the first time ever. Tyler continues to do physical therapy, cupping, acupuncture, and guasha to keep himself active. His spirits are up and he spends lots of time training his puppy Nalu.

Please keep the Decker family in your prayers as we hope for the cure. Tyler will be the miracle.