Skip to main content

ALS research is expensive & underfunded

Would you be surprised to learn that vital research and clinical trials required to approve a new drug therapy are extremely expensive?  You might also be shocked to discover that ALS research is abysmally underfunded. Those are two disheartening facts about ALS that our founder Augie Nieto discovered early on in his fight against this devastating disease.  

As a result, when Augie founded Augie’s Quest to Cure ALS, it was his steadfast mission that all funds raised were invested directly towards the cure for ALS. Our team has kept true to his mission as it was clear early on to Augie that Augie’s Quest needed to be laser-focused to find a cure and fund the best ALS research.

Augie’s Quest Translational Research Center & AT-1501

One of our biggest accomplishments came in 2020, when we launched our funding and support for the Augie’s Quest Translational Research Center at the ALS Therapy Development Institute (ALS TDI). The center is dedicated to continuing our quest in identifying new drugs like AT-1501 to fight ALS.

The AT-1501 research initiative marks the very first time in history a non-profit organization research project has ever reached this stage of drug development — incredible news that was made possible thanks to our generous supporters. 

Due to our initial funding of ALS research, the first AT-1501 subject was enrolled by Eledon Pharmaceuticals in their Phase 2 clinical evaluation trial in November 2020.

In August 2021, Eledon Pharmaceuticals announced that the Phase 2 clinical trial of AT-1501 — which shows promise to improve muscle function, slow disease progression and improve survival for people living with ALS — is likely on track to be fully enrolled by the end of 2021.

It’s estimated that 54 adult patients with ALS in the United States will be enrolled in the study at 12 separate ALS treatment sites. Once patients are established in the study, they will be administered four ascending doses of AT-1501 via IV infusion in each of the sequentially enrolling cohorts. Each participant will receive six bi-weekly infusions of AT-1501 over an 11-week period. 

We are proud to partner with ALS TDI to fund critical science and drug development at the Augie’s Quest Translational Research Center and are excited for new and emerging scientific developments. 

The need to discover and fund more research and clinical trials like AT-1501

ALS is very complex. Each person’s symptoms are uniquely presented and progress differently in each individual. It is our mission to fund multiple research efforts and treatment options to discover a spectrum of treatments for each person affected with the disease. 

Partnering with the Eddie and Jo Allison Smith Foundation, Augie’s Quest is funding the first 100 patients to be enrolled in ALD TDI’s Precision Medicine Program this year. The data collected from volunteer ALS patients in this program is expected to be an important discovery, and further supports the belief that multiple therapies will be needed to treat and cure ALS. We are determined to continue to fund the best research to make these drug therapies across the ALS spectrum a reality.

While  Augie’s Quest is hyper-focused and dedicated to specifically curing ALS, there is notable evidence that the AT-1501 therapy might also be an effective ally in fighting against other diseases like Alzheimer’s disease and Lupus. The ripple effect of giving to Augie’s Quest to fund drug therapies like AT-1501 is very heartening. 

Augie’s personal focus in the fight is stronger than ever

Augie’s extensive network of friends and family can attest to how sharp Augie’s mind continues to be. His closest friends remark that Augie seems to be even more focused and attentive than in his pre-ALS life, due to having to transfer his boundless physical energy and enormous creativity to successfully power his new life’s work to find a cure for ALS. Augie’s relentless drive, his sense of humor, and his refusal to accept the word “no” have been the key components to our success in fundraising for the cure for ALS.

As CEO of Eledon Pharmaceuticals, David-Alexandre Gros tweeted, “There would be no AT-1501 without Augie and Lynne Nieto and Augie’s Quest”.  Under Augie’s personal oversight and continued leadership, more than $150 million has been raised for ALS research.

How you can help fund the fight

Donor support has been critical in making AT-1501 a possible therapy reality for those living with ALS, and we will continue to support our research partners at ALS TDI and CEO Fernando Vieira lab’s incredible research efforts. Our goal for 2021 is to return to our pre-pandemic funding levels to drive new and exciting therapy research opportunities at ALS TDI. Today, there is real hope like never before. 

We’re working day in and out to fund the next promising ALS treatments like AT-1501, and we won’t stop until we end ALS. With Augie’s Quest, ALS doesn’t stand a fighting chance. Support our quest to find a cure by making a donation.

ALS won’t stop and neither will Augie’s Quest

Augie’s Quest to Cure ALS
PO Box #9886
Denver, CO 80209

T: 949-506-1007

Copyright © 2022 Augie's Quest. All Rights Reserved.