Daniel Barvin, a pre-symptomatic ALS family member and ALS TDI supporter, shares his story and talks about why we need to end ALS for every family impacted by this disease.


One day I’ll develop ALS, just like my father, aunt, and uncle before me. And guess what? That inspires me, because I’ll be the last ALS patient in my family. I’ve protected my son, and now I’m trying to change the future of ALS.

We need to end ALS, and I am asking for your help.

When I first met my wife, Kaori, back in 2010, I was nervous to introduce her to my family. We didn’t know there was such a thing as familial ALS, where a specific genetic mutation is passed down from generation to generation.But, my aunt and uncle had both passed away from ALS and my father was suffering from Frontotemporal Dementia (FTD). We now know that all of their diseases were caused by the same familial ALS gene mutation, C9orf72.

I was afraid that meeting my father and learning about my family history would scare Kaori away. But, luckily, it didn’t. In 2017, almost a year after my father passed away from FTD, Kaori and I were married. I wish my father could have been a part of the happiest day of my life.

Only months after being married, we received news that would forever change our lives. We learned that my father had carried the C9orf72 mutation and that there was a 50% chance he had passed it on to me.

Everything suddenly made sense, but at the same time my mind was flooded with frightening questions. I thought about my wife and our plans to have children. I wanted to protect Kaori from having to become a caretaker, and I wanted to prevent this gene from being passed down to our children and future generations.

So, in early 2018, we spoke to a genetic counselor to learn my risk for having and passing on the mutation. If I tested positive, I would have a 97% chance of developing ALS.

In December of 2018, I tested positive for the C9orf72 mutation.

While it may not be the same as receiving an ALS diagnosis, it definitely wasn’t the news we wanted. I was 30 years old, healthy, and newly married, having to think about my mortality. As devastating as this news was, there was a silver lining.

We had learned that we could do IVF and Preimplantation Genetic Diagnosis (PGD) to ensure that this genetic mutation would not be passed down to our children.

Thanks to these scientific advances our son, Kai, was born four months ago! Knowing he would be safe from ALS and the devastation it has caused my family, we could truly celebrate. My children will not carry or pass down this gene. We have ended familial ALS in my family.

Except, of course, for me. I’m going to get ALS. But, how this impacts my future depends on the work that scientists, like those at the ALS Therapy Development Institute (ALS TDI), are able to do now.

I truly believe the work that ALS TDI is doing is going to change the future of ALS. They are as passionate about this cause as we are, and they understand the urgent need to stop this disease.

This has been an unprecedented year, but with our support, ALS TDI is continuing the pace of ALS research.

In September, their scientists published a groundbreaking new discovery that could point to a potential new drug target for people with the C9orf72 mutation. This discovery has potential to help identify treatments for people with various other forms of ALS. But they need us to move this research forward, to develop potential drugs, and to get them to people with ALS.

I am writing today to ask you to join me as we work to help end ALS for every family impacted by this disease. Last year, our funding helped ALS TDI to learn more about this disease and find new unexplored avenues for the development of potential treatments for people with ALS. ALS TDI is getting closer to finding effective treatments, but they need community members like you and me to fund their research. I urge you to consider making a gift today to help speed up their efforts and get us closer to a future without ALS. The average gift given to ALS TDI in 2020 was $100. Will you consider making a similar or larger gift to support the organization’s critical work?

Now, more than ever, we need to come together and support ALS research. Please donate to ALS TDI and join me in helping find treatments for all of the people living with ALS today, and for the generations to come.

Thank you so much.

Daniel Barvin