5 years of $100 million is allocated. Mark your calendar for December 23, 2025. A report is to presented on who received the money and how much. It will be interesting to see if measurable progress has been made with the money.
ALS Therapy Development Institute's slogan is "ALS is not an incurable disease; It is an Underfunded One." It is not underfunded anymore.
Three years ago Sean Healey gave over $40 million when he was diagnosed with ALS. Mass General named a center after him. He did not enjoy the customary average 5 years of life with the disease. It seems his money did not get him any additional time living.
ALS Association raised $135 million for the Ice Bucket Challenge.
Let us hope allocating a half billion dollars to this disease in the next five years can make a measurable difference and that past performance is no reflection of future performance.
Congratulations to those who worked on the Accelerating Access To Critical Therapies for ALS Act and to those who voted for the Act. This really is an achievement, to have gotten this money allocated for ALS. Thank you!