The ALS Ice Bucket Challenge was co-founded by two young men with ALS – Pat Quinn, diagnosed with ALS at age 30 and Pete Frates, diagnosed with ALS at age 27. The purpose was to raise awareness and funds to help end ALS. From everyday people to celebrities, people from all walks of life participated – recording themselves, sharing the videos on social media, and challenging others to join the movement.

No single ALS organization was designated as the sole recipient of the challenge. Instead, donations were directed to the ALS organization of each participant's choice.

All told, the Ice Bucket Challenge Raised an estimated $135 million for ALS in the United States, and $220 million worldwide. Of that $135 million in the U.S., $4 million was donated to ALS TDI – and was immediately invested to advance our mission to end ALS.

Anthony Carbajal, who was diagnosed with ALS at the age of 26, was responsible for nearly $3 million of this total. After being challenged to take the IBC by ALS TDI, Anthonys' video quickly went viral. A few weeks later, Ellen DeGeneres answered Anthony's Challenge – and had him on her show to help and encourage people to donate to support ALS research.

Thank you to the millions of people who participated in the Ice Bucket Challenge and helped push the needle forward in ALS research!

As a nonprofit biotech, ALS TDI’s cutting-edge research is funded by donations from the community. We will continue to work relentlessly until everyone with ALS has effective treatments.

Thanks to the $4 million raised through the Ice Bucket Challenge, ALS TDI made significant strides in our research to find treatments for ALS. Here's how we invested those funds:

ALS TDI invested $2 million into the ALS Research Collaborative. These funds allowed us to rapidly expand the ARC study from 25 to 300 participants immediately following the ALS Ice Bucket Challenge. Over 1000 people with ALS have now participated in the ARC study and it is the longest running natural history study in ALS. The deidentified data collected by this study are now shared with researchers across the world through the ARC Data Commons – making an even greater global impact.

ALS TDI also invested $2 million was into the development of an anti-CD40L antibody development. Now called tegoprubart, the treatment successfully completed a phase 2 clinical trial in May of 2022. ALS TDI is the first nonprofit biotech in ALS to invent a potential treatment and bring it from our own lab, through FDA review and into a clinical trial.

We will continue our work to develop and advance potential treatments until everyone with ALS has effective treatments.