In a letter penned for Sports Illustrated, former Penn State linebacker Tim Shaw revealed more insight into his struggle to deal with the emotional and physical pain of fighting ALS, a rare and debilitating disease that affects an estimated 30,000 Americans at any given time.

Shaw, 30, started for the Nittany Lions in 2006 alongside Bednarik Award winning linebackers Paul Posluszny and Dan Connor, considered one of the best linebacking corps in Penn State history. After being drafted in the fifth round by the Carolina Panthers in 2007, Shaw enjoyed a five-year NFL career.

At the end of the 2012 season, however, he noticed an unexplained change in his body. His balance was off. He had slight twitches in his muscles. He could barely lift weights.

After meeting with a specialist, Shaw recounted the moment when he heard the news that would change his life.

Tim, you have ALS.

What do you do when you hear that? What can you do? When I left the doctor’s office, I was stunned. I couldn’t call anyone, because I couldn’t talk. Not right then, at least. I definitely couldn’t call my parents. They would be heartbroken, and I couldn’t fathom listening to the worry in their voices. I texted my brother on my way to the car, and then just carried on with my day as a usual. I even went to a business meeting. As I went through the motions, the diagnosis lingered in the back of my mind. I hadn’t really come to terms with it, and it definitely hadn’t hit me. All I knew was that everything was about to change.

Sadly enough, this wasn’t the first time he encountered ALS. Shaw witnessed firsthand the sobering power of the disease after his sister-in-law’s mother passed away from ALS in February. He said the “outpouring of love and support” he received from former teammates, friends, and complete strangers is amazing and humbling, but a difficult reminder that there is still a disease left to fight.

Shaw said the “ALS Ice Bucket Challenge” has done a great job of raising money and generating awareness for fighting the disease, but there is still much work to be done to ensure the support doesn’t fade away.

A lot of people have asked if football had any role in my contracting the disease. I don’t have the answer to that, and I don’t think doctors know the answer either. That’s the problem: ALS research has been severely underfunded. When a person gets diagnosed with cancer, they know they can try treatment. There are medications they can take and survivor stories they can lean on. When a person gets diagnosed with ALS, they have no options. There are no success stories. There is little hope. You ask, Why aren’t doctors looking at me more? Why aren’t they studying me? Why are there no answers?

Currently, Shaw and his father are on a 10-day trip to Brazil to help villages receive fresh water, and when he returns, he’s going to do everything he can to make sure others can affected by the disease get the help they need.

I have ALS, but I am not letting that dictate my life. I wish I didn’t have this disease, but I have been given this platform, and I will do whatever I can to push the conversation forward. I don’t know what that looks like at this point. I do know that any invitations I receive to speak, I’ll speak. Any opportunities I’m asked to get involved with, I’ll do so. I’ll get my own money and pour my own support into this. Now the world knows I have ALS. What are we going to do about it?

Check out the entire letter here. We’re wishing Shaw and his family nothing but the best.