165 Cambridge Street
Boston, MA 02143
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.
— Daniel (above with family and dog), DIALS and PREVENT ALS participant
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
— Patrick (pictured at top with Dr. Katie Nicholson), DIALS and PREVENT ALS participant
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.
— Bonnie (at left), DIALS 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!
Over 30,000 people have ALS in the US alone.
10,000 new patients are diagnosed in the US every year.
Ten percent of ALS cases are due to an inherited mutation.
Half the people in these families develop ALS.
Your gift to PREVENT ALS will make a significant impact in expanding to new sites, enrolling more participants and incorporating new approaches to unlock key molecular changes in ALS.