News and recognition

Alan Premasiri has worked at the ALS Therapy Development Institute for thirteen years. He is the Director of Clinical Research Operations there, and his team runs a natural history study that collects data directly from people living with ALS.

We asked him eight questions over a video call. What has changed in the field since he started in 2013, why institutes have to share what they find, what the public still misunderstands about ALS, and how close a treatment is.

The answer we keep coming back to was about awareness. He said the useful kind is awareness that groups like his exist, so that somebody who gets diagnosed knows where to turn instead of being left with no direction.

Chipotle is hosting a fundraiser for ALS Forward on Saturday, September 19, from 4 to 8 PM. The restaurant is at 14635 Hazel Dell Xing in Noblesville, Indiana, and 25% of event sales will go to ALS Forward.

You can eat in and show the flyer at the register, or order online for pickup with the code 66BYC3M. Online orders only count if they are picked up at this location during the event. Delivery orders and gift cards do not count.

Chipotle only makes a donation if event sales reach $150, so please come if you can and tell your friends.

This is our first fundraiser with a restaurant. If it goes well, we would like to host one in Arizona too. Thank you to the Hazel Dell Crossing Chipotle for having us.

Our first pickleball tournament was on the evening of August 15 at Gilbert Regional Park in Gilbert, Arizona. Twenty-four people signed up and played on four lighted courts, and we raised $120 in entry fees for ALS research.

Entry was $5, and 20% of the entry fees went to the winners as prize money. We had snacks and drinks for everyone between matches.

All of the money raised goes to the ALS Therapy Development Institute.

Thank you to everyone who came out to play. We are planning the next one now.

Samarth presented our ALS research at the American Junior Academy of Science (AJAS) in Phoenix. AJAS met February 12 to 14, 2026, alongside the AAAS Annual Meeting.

His poster covered NeuroGraph, the project that won first place in Computational Biology and Bioinformatics at Regeneron ISEF 2025. We used graph neural networks to tell ALS apart from controls and proposed three KRT proteins as ALS biomarkers. The poster also covered PT150 as a possible treatment.

Samarth wrote the paper with Arnav Sharma, Aryav Das, and Pranav Kulkarni. The full paper is on bioRxiv.

In May 2025, our ALS project won first place in Computational Biology and Bioinformatics at the Regeneron International Science and Engineering Fair (ISEF).

The project used machine learning and molecular docking to study PT150 as a possible ALS treatment.

The video below is from the Grand Awards ceremony when our category was announced.

A few months later, we started ALS Forward to raise money for ALS research.