Throughout the years, we hear numerous rumors regarding research projects, funding sources, industry breakthroughs, etc. Recently, we have received a number of questions regarding a new rumor that the ALS Association is acquiring, or otherwise merging with the ALS Therapy Development Institute. To clarify, this is a rumor and is untrue.
Currently, the ALS Association is a funder of our recently announced research partnership with UMass Medical and MGH called ALS ONE, but the bottom line is that we are not merging.
The ALS Therapy Development Institute is the world’s largest independent nonprofit biotech that is 100% focused on ALS. We are led and funded directly by people with ALS, their families and their communities. From the very start of our organization in 1999, we have been committed to the value of transparency with the ALS community as we fully share (online) our annual reports and IRS filings from every year we have existed. We have an open door policy and host hundreds of people with ALS and their families for tours and discussions about our work at the Institute each year.
Since being founded, we have aimed to treat people with ALS as research partners. This is evident in the fact that our precision medicine program is the only active program of its type that actually gives data produced back to participants in the program.
The most important collaborator, the most important partners to our Institute, are people with ALS, their families and communities. We have always felt that if we were truly going to make ALS go away that it would take people with ALS and their families driving it, making the decisions and funding the work. We continue on with that philosophy.