In May 2023, Lynne Nieto was unanimously voted in as the chair of the ALS Therapy Development Institute’s (ALS TDI) board of directors. A few weeks before, she also took over as the chair of Augie’s Quest to Cure ALS. In taking on these responsibilities, she is filling two positions sadly left empty by the passing of her husband, Augie Nieto. As board chair of ALS TDI and the leader of Augie’s Quest, Augie had an incredible impact on ALS research for nearly two decades. Lynne says that her foremost goal is to honor – and continue – that legacy.
“I promised Augie on the day he left his body behind that we would collectively carry on his mission,” she recalls. “The only real difference is that I am now the chairman of Augie's Quest. The rest of our staff knows that this is something that is a long-term project, and we're going to stick with it until we're successful.”
Since its inception shortly after Augie was diagnosed with ALS 18 years ago, Augie’s Quest has been one of ALS TDI’s most critical partners. They have provided millions of dollars in grants to support ALS TDI’s research to find effective treatments for everyone with ALS, and have helped to spread awareness of our mission to end ALS.
“After he was diagnosed, Augie knew he wanted to use whatever life he had left to raise funds for the best science he could find,” says Lynne. “When Augie got to know ALS TDI, he knew it was the best place for Augie’s Quest to put their money to use funding the science.”
In addition to his organization’s financial support, Augie provided leadership and direction to ALS TDI as the chairman of the board. Now, as she undertakes both positions, Lynne emphasizes that she aims to continue to support ALS TDI’s research – and to hold us accountable to the shared mission of both organizations.
“I'll do my best to bring leadership, to bring connections and to try to motivate, to make certain that we don't forget what our mission is, and that's to eradicate ALS,” she says. “I believe that the good work done at ALS TDI will ensure continued funding from Augie's Quest. I’m very proud that ALS TDI, with Augie’s Quest’s support, was able to move AT1501, now tegoprubart, into clinical trials. We need to give people that are diagnosed now and are living with ALS hope – real hope, and not just a wing and a prayer. So, we need to continue what’s currently being done at TDI, and to show success going forward.”
For Lynne, this mission could not be more personal. For 18 years she was active in the fight against ALS alongside Augie. Now, she intends to make sure that the quest to which he dedicated his life will continue moving forward.
“I'm most hopeful about getting treatments and, ultimately, cures, because this has got to stop,” she says. “ALS has to end. We've lost too many people, and we continue to lose people. I lost my husband. Now it's going to be my life's work to make certain that his dream – even though he knew it would never be in time for him – is successful. Because, as Augie and I used to talk about a lot: ‘If it's not us, then who's going to do it?’”
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