PREVENT ALS

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. We are on a mission to identify the very first signs of ALS to prevent the disease from ever getting started.

PREVENT ALS brings together two existing programs studying people who may potentially carry ALS-causative gene mutations: the DIALS study led by Drs. Mark Garret and James D. Berry (Massachusetts General Hospital) and Dr. Timothy Miller (Washington University in St. Louis) and the ALS Families study led by Drs. Neil Shneider and  Matt Harms (Columbia 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.

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.

PREVENT ALS expands our collective footprint, increases our ability to find answers and hastens discovery.

We hope to:

• 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
• Evaluate gene-environment interactions
• 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.