The ALS world has been abuzz with goings on , lately! Lots of activity that has the potential to get the needle moving forward at a faster pace. And pALS are leading the charge !
One of the biggest headlines was the release of the updated FDA guidance document. This document provides drug developers a framework from which to design clinical trials. It is a big deal because the previous document was sorely lacking. The new one allows for innovation and a speedier process among other key points. In other words , better , more efficient trials that don’t take decades to complete.
Much of the movement within the FDA has been a result of the advocacy of patients and patient led organizations like I Am ALS and Facebook group No More Excuses. The ALS community has, in essence, grown tired of waiting for the world to acknowledge our plight and decided to make things happen. It is our turn, now!
I Am ALS has been hard at work rallying U.S. politicians to join a caucus to support the ALS community from a legislative standpoint. Progress is being made in the area of neurological disorders, but we are still a long way from cures. Therefore, those relationships must be cultivated to keep our fight at the forefront now and in the future.
Almost daily, you can read about various clinical trials being conducted. One that is of particular interest is set to be conducted by Massachusetts General Hospital. This hospital is well known for leading the way in the medical field. They will be conducting the first platform trial for ALS. Platform trials are common in oncology. They can streamline the testing of multiple treatments on fewer people , faster. That is huge in my opinion !
Along with this excitement, I have seen a surge in involvement internationally. The world often looks to America to lead the charge. But in recent months, I have noticed that advocates around the world are stepping up to be active. We need this ! Our voices need to be heard around the planet. The time for hoping that the world pays attention to ALS is passed. We need to demand the attention. If you are reading this somewhere in the world. If ALS has touched you. Please get involved.
The road is far from the end. Many obstacles still lie ahead. But the ALS landscape is changing and abuzz with activity.