In March 2022, after several months of multiple doctor visits and many tests, Jacob Harper was diagnosed with P525L FUS ALS—a nano-rare version of ALS only found in people under the age of 25. Jacob is on the Jacifusen clinical trial trying to slow progression, as he shares his testimony with people from all over the world.
Clinical trials are the most reliable – and ultimately the fastest – way to translate promising laboratory science into new and better ways to treat and care for people living with ALS. Therefore, the Association is working to significantly increase the number of high-quality ALS clinical trials as part of its strategic priority of finding new treatments and cures.
There is an urgent need for new and improved therapies for ALS, as there is still no cure. The Clinical Trials Awards Program is open to industry and academic investigators proposing to develop novel or repositioning approaches for ALS.
When most people think about participating in research, they think about clinical trials, which test the safety and effectiveness of new drugs and treatments. Not everyone is able to participate in clinical trials, but observational and survey studies are also essential for building knowledge that can help make ALS a livable disease. Observational studies give researchers the opportunity to learn about the course of a disease or find new ALS genes or biomarkers.