Like a housefire starting with a single match, ALS begins in one area and spreads. Imagine the impact of blowing out the match before it can ignite the fire, or better yet, removing the matches from the house. The first job for PREVENT ALS will be to find where the matches are kept. In other words, we don’t yet know what the earliest disease indications are, but we are on a mission to find out.

PREVENT ALS builds on existing pre-symptomatic ALS gene carrier programs, such as the ongoing DIALS study led by Drs. Katie Nicholson and James D. Berry at Massachusetts General Hospital and Dr. Timothy Miller at Washington University. Together, these dedicated researchers are working to gather the critical number of individuals with ALS or at risk of ALS that will allow us to overcome variability between people, get us to our goal as fast as possible, and build a committed team of people working together to fight ALS.

Daniel with his family

Having seen first-hand the damage that ALS inflicts, I want to rid the world from it for good. Participating in DIALS – and now Prevent ALS – provides such a feeling of connection and community in an area where it’s so easy to feel isolated and alone. The DIALS team took me from a period of unknowing, doubt, fear and insecurity to compassion, care and community. Now I feel like I can have a direct impact on finding a cure – that’s the ultimate goal. It’s so personal – I could save my own life.

— Daniel (above with family and dog), DIALS and PREVENT ALS participant

PREVENT ALS will expand our network to 10 PREVENT ALS sites enrolling over 1,000 participants. To meet this goal, we will establish a multicenter collaboration, bringing together the most capable and innovative ALS experts from around the world for maximal impact.

We will:

  • Identify genetic modifiers of ALS onset and progression and target them for repair, so we can create therapies to delay or prevent ALS onset
  • Understand the earliest biological changes, or biomarkers, of ALS and how they start, with new approaches like immune profiling, gut microbiome analysis and the creation of a dedicated stem cell core
  • Evaluate environmental risk factors and their interaction with genetics in stem cell models, allowing for rapid identification of gene-environment interactions that we can apply to all ALS cases
  • Test clinical tools like speech analysis and strength testing to detect early ALS changes and act as outcome measures for ALS progression

My mother, two of her sisters and one brother all died of ALS — it’s been very prevalent in the family. Knowing I have the gene — initially it tortured me. But participating in the DIALS research allowed me to take my power back. Almost immediately I felt less like a victim.

Seeing DIALS grow into Prevent ALS — going from a single site to 10 sites nationally — that means that members of my own family who have been inhibited to participate in research by cost or logistics of travel will very likely have a center close by that will allow them to participate. The goal is real now. The concept of a cure — I think of my kids first — that hopefully they’ll never have to deal with this.

— Patrick (pictured at top with Dr. Katie Nicholson), DIALS and PREVENT ALS participant

My family has a history of ALS and dementia. My dad was diagnosed with ALS in 2017. A few months later we found out that the culprit for the disease plaguing my family is a gene mutation found in the TARDBP gene. Even though I knew there must be a cause for ALS to be so prevalent in my family, it really took the wind out of my sails to have a name for it. I was lost for a few weeks processing this information and trying to find out how to “fix” my dad. Thank goodness for Google I was able to contact neurologists worldwide, and one of them guided me to the DIALS study. This is where I met Dr. Nicholson and her AMAZING team! They are working tirelessly so that no one else has to go through what my dad did. I found out my gene status, which came back positive for the TARDBP mutation. I wasted no time and joined the DIALS study. I now have a team that follows me, and that has given me hope!

— Bonnie (at left), DIALS participant