The ALS Therapy Development Institute (ALS.net) is committed 100% to ALS research and is actively discovering and developing effective treatments as quickly as possible. The drug development process is a long and challenging one, especially with a complex disease such as ALS. However, we understand the urgent need for treatments felt by all those affected by ALS, in part due to our history and leadership, with patients and families at the forefront of helping to combat this disease.
Over the past several years, a series of new laws have been written in various states in the US, sometimes termed “Right to Try” laws. There are many different aspects to these various pieces of legislation, and they can differ in content and status between states. Currently, the four states in the US to have “Right to Try” laws include Colorado
, and Michigan
. At least one other state, Arizona
, is set to vote on a version of a bill on November 4, 2014.
The ALS Therapy Development Institute believes that people diagnosed with ALS deserve to have access to the most up-to-date information about treatment options including; current approaches that are FDA-approved, those that are in a clinical trial, and those that are at earlier stages of development. Therefore, in addition to being the largest independent ALS research organization in the world, the Institute invests resources in pushing information about these topics directly to the ALS community through a variety of mechanisms. For example, ALS.net hosts the most comprehensive global clinical trial database
, providing information on more than 100 clinical trials worldwide. ALS.net also maintains a Treatment Index
and co-hosts webinars
with PALS, CALS, and scientists to explore more in-depth the various approaches that individuals diagnosed with ALS take. The Institute also believes that it is crucial for patients, caregivers, and scientists to connect in real-time about research and development topics. Since our inception, we have hosted the world’s largest online discussion of ALS treatment approaches, including off-label and alternative approaches, via our ALS Forum
The Institute encourages PALS and their supporters to utilize resources available on ALS.net before engaging in a treatment approach in their home state under a “Right to Try” law. Without an effective treatment which universally slows, stops, or reverses the progression of ALS, we believe an informed patient makes the best decisions toward their individual treatment plan.