Impact

Dedicated to finding a cure for ALS.

ALS is not incurable – only underfunded.

Augie’s Quest to Cure ALS raises the funds and awareness urgently needed to advance cutting-edge research, fast-track effective treatments, and ultimately, find a cure for ALS.

2021 Accomplishments

In December 2021, Augie’s Quest to Cure ALS committed $5.8 million to fund the discovery of new candidate drugs to slow, stop, or even reverse ALS disease progression at the Augie’s Quest Translational Research Center through 2024.

Special thanks to Nancy and Paul Sallaberry for their leadership to make this possible, and to David Pyle and the OneRoot Foundation for their continued support

It is our mission to fast-track effective treatments; to move promising and creative science forward as quickly as possible. Thanks to the generosity of the Bodine and Bhusri families, Augie’s Quest provided our research partners at the ALS Therapy Development Institute with a $1.5 million grant to focus on the discovery of new drug targets, in honor of Elizabeth Scott Bodine.

The discovery of a new drug target is akin to opening an entirely new avenue for slowing, stopping, or reversing ALS — providing new hope for those living with ALS.

Understanding the factors that influence the variability in disease progression may lead to new treatments that slow the disease down in ALS patients.

This is why we’re excited to support an emerging research project at Duke University led by Richard S. Bedlack Jr., MD, PhD, studying the potential role of the gut microbiome in ALS progression and reversals.

There will never be a silver bullet to treat and cure ALS. We are furthering our work with our research partners at the ALS Therapy Development Institute and the Augie’s Quest Translational Research Center by designating $125,000 in funding to discover key biological features that distinguish different subtypes of ALS. The goal: making each subtype of ALS treatable.

This gift is in honor of Augie’s Quest Leadership Council member and ALS Champion, Phil Green.

ALS is not experienced in the same way among all those diagnosed. However, as the disease progresses, the ability to speak degrades.

Thanks to the generosity of the Ed & Mary Shea Foundation, we have provided iPad’s with TypeRight Assistive communication software to ALS patients, as well as two nonprofit partners to provide this communication tool to more ALS patients.

 

Fast-Tracking the Most Promising ALS Treatment Yet

“I’m excited and hopeful about AT-1501 as a potential treatment for people living with ALS,” said Augie Nieto, Chairman and Co-Founder of Augie’s Quest to Cure ALS.

Eledon Pharmaceuticals fully enrolled the  Phase 2a clinical trial evaluating AT-1501 in adults with amyotrophic lateral sclerosis (ALS) in December of 2021.  AT-1501 blocks the activation of the CD40L pathway, which has been shown to improve muscle function, slow disease progression, and improve survival in a pre-clinical animal model of ALS.

David-Alexandre C. Gros, MD, CEO of Novus Therapeutics tweeted: “There would be no AT-1501 without Augie & Lynne Nieto, Augie’s Quest, and the ALS Development Institute.  Novus Therapeutics is excited and proud to build on their extraordinary accomplishments and to continue working together to develop better treatment options for people living with ALS.”

This marks the very first time a non-profit organization has ever reached this stage of drug development – in any disease indication.

It is likely our findings and treatment discoveries for ALS may also help fight other neurodegenerative diseases in the future. The development of AT-1501 may also have a significant impact in Type 1 Diabetes and Alzheimer’s disease as well as many autoimmune diseases including Lupus, Sjogren’s syndrome, psoriasis, and rheumatoid arthritis. 

“It’s really incredible. For 15 years, Augie’s Quest has been dedicated to raising the critical funds and broad awareness needed to help fast-track ALS TDI’s cutting-edge ALS research – specifically providing ALS TDI with more than $150 million to advance its efforts to end ALS,” commented Steven Perrin Ph.D., CEO of ALS TDI.

Augie’s Quest Translational Research Center at ALS TDI

In January 2020, the ALS Therapy Development Institute announced the Augie’s Quest Translational Research Center at ALS TDI. This Research Center honors the work, innovation and steadfast support of Augie’s Quest and its many generous and committed donors to finding a cure for ALS.  Housed within ALS TDI’s laboratory, the Augie’s Quest Translational Research Center will help to strengthen its existing and future research efforts by aiming to dissect mechanisms of clinical ALS and use the knowledge to develop new, more powerful drug discovery platforms and facilitate more effective drug development in ALS.

“We owe much of our progress and ability to expand this transformative, essential research to Augie’s Quest. And, we are honored to celebrate this impact on our science,” says Fernando Vieira, M.D., Chief Scientific Officer, ALS Therapy Development Institute.

Precision Medicine Program (PMP):

ALS TDI’s translational research effort was initiated and is carried on in tight integration with its Precision Medicine Program (PMP), the most comprehensive and longest running translational research study in ALS. Through the PMP, researchers at ALS TDI partner with people with ALS around the world to share data that feeds into the Augie’s Quest Translational Research Center. This integration serves our mission to discover and develop effective treatments for ALS.

The PMP uses big data to better understand ALS progression on a patient-by-patient basis, and provides people with ALS personalized information to guide their individual ALS journey.  Combing through these large datasets that trace and define a person’s unique experience with ALS helps accelerate our science to potentially streamline the clinical trial process, making it more agile and less expensive. We believe the next ALS breakthroughs will come from this robust program!

Drug Development

We are working day in and out to bring the next promising ALS treatments successfully through to clinical trials, and as quickly as possible.

One big reason we’re in this position today – is our innovative model. It’s driven by the business savvy of Augie Nieto and our board, combined with our collective, unlimited passion and vision to end ALS. We are certain one day we’ll go from saying “Lou Gehrig’s disease” to “Augie’s Cure.”

There will never be a single, magic silver bullet to treat and cure ALS. We know ALS is very complex, and each person’s ALS is unique, progressing and presenting differently. We will need multiple treatment options to support the ALS community and give every person with ALS a fighting chance against this disease.

 

 

What is ALS?

Disease

Amyotrophic Lateral Sclerosis, or ALS, is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. Someone is diagnosed with ALS every 90 minutes, and roughly 30,000 people in America have this condition.

DIAGNOSIS

There is no single diagnostic test for ALS. However, experts in the disease, usually neurologists specializing in neuromuscular diseases, are very capable of diagnosing it. Review the early signs of ALS.

 

PROGNOSIS

Most people with ALS live 2-5 years after their first signs of disease. About 10% of people with ALS survive at least 10 years. This variable rate of disease progression makes prognosis difficult to predict and therapies challenging to develop.