Former ALS TDI President, Sean Scott, and current CEO, Fernando Vieira, hiking in Yosemite in 2005. Sean passed from complications due to ALS in 2008.

A letter from ALS TDI’s CEO, Fernando Vieira M.D.

"The dialogue of reason and skepticism that you and I share is not commonplace. It will be up to you now to insert this point of view into the workings of science you touch...You need to know that there are always...people who plan the end of their lives around what we tell them. As such, it is critical that we not generate fluff."

Those words were written to me in 2008 by Sean Scott, former President of ALS TDI and my best friend. He was living through late-stage ALS at the time. 

As I reflect on ALS TDI’s 25th anniversary, Sean’s words resonate with me more than ever. 

As someone who has been researching this disease for 20 years, I find myself deeply encouraged by the current state of ALS research. However, I also know that you are exposed to a dizzying number of announcements about findings, breakthroughs, and progress. In the past year, we have witnessed how even indications of tangible progress can prove less solid with subsequent study - and in these challenging moments for our field, I have been reminded of Sean’s words.

People plan their lives around what we tell them. And as I lead us in our joint mission to end ALS, I pledge that I will do everything I can to find treatments as quickly as possible. I will communicate openly and honestly about our progress – but will not over-promise or share findings in a way that creates a sense of false hope. 

When we discover a novel therapeutic target, we don’t hype it as groundbreaking. Because in science, especially in biology, it is almost impossible to know immediately whether a new finding is truly groundbreaking. 

When we identify molecules, or potential treatments, that are effective in our lab, we’ll be clear that more testing is needed. We can’t be certain that they will be safe and effective until clinical trials tell us so.  

And when things don’t work out, we'll level with you. Knowing that a drug doesn’t hold promise in treating ALS can be disheartening, but it is critical that we learn from it, and that we use it to find the next targets.

You deserve nothing less than the truth. And the truth is that ALS TDI is working to advance potential treatments that could be effective for people living with ALS today. But they won’t work for everyone. More treatments are needed. Research needs to continue at a rapid pace.

So, you aren’t going to hear us say phrases like: We are curing ALS. But we will continue the relentless research that is needed to fulfill our joint mission. And we will not stop until we can definitively say together: We cured ALS. 


Fernando Vieira, M.D.

CEO and Chief Scientific Officer

ALS Therapy Development Institute

To learn more about the values and people that shaped ALS TDI, visit our 25th Anniversary page at

What To Do Next:

Sean Scott (3rd from left) with ALS TDI researchers, including current CEO, Fernando Vieira (3rd from right).