Our global research efforts and philanthropic support are now allowing us to think about preventive strategies, in addition to earlier diagnosis and intervention. This is a huge leap forward, thanks in no small part to the families with one of the inherited genes who are willing to share samples and participate in research studies. PREVENT ALS is an initiative with big aims: It holds the key to stopping ALS in its tracks – before it even begins. Already, we know that few things are more important than treating ALS early.
Our goal is to expand our network of PREVENT ALS sites to enroll over 1000 participants, by building on our ongoing study led by Drs. Katie Nicholson and James D. Berry at Mass General Hospital and Dr. Timothy Miller at Washington University. To meet this bold goal we are establishing a multicenter collaboration, bringing together the most capable and innovative ALS experts from around the world for maximal impact. Learn more about PREVENT ALS.
Below, Shelby Saer, DIALS and PREVENT ALS participant, shares her motivation for participating in ALS gene research.