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Funding the Most Promising ALS Research

By Research

Augie’s Quest to Cure ALS is proud to provide $500,000 to our research partners at the ALS Therapy Development Institute (ALS TDI). The grant funding will help ALS TDI continue making critical advancements in our understanding of ALS and develop new treatments for those living with ALS today.

We are determined more now than ever, to continue funding the best science and most promising research to fast-track effective treatments and find a cure for this devastating disease. Grant funding will be put to immediate work within the Augie’s Quest Translational Research Center at ALS TDI and will support:

  • The discovery of new drug targets by using pluripotent stem cells: a type of stem cell that has emerged as a significant source of stem cells for ALS research.
  • Expanded drug discovery model development to move possible ALS treatments from the lab to the clinic as quickly as possible.
  • The process to investigate and validate potential biomarkers in human blood: one potential way to improve earlier diagnosis of ALS would be to identify specific biomarkers that can be identified early in the disease process.

The Augie’s Quest Translational Research Center is part of the ALS Therapy Development Institute, the world’s most comprehensive lab dedicated solely to ALS research. Located outside of Boston, ALS TDI is a non-profit biotech that spans every aspect of drug discovery research and therapeutic development. Through the Augie’s Quest Translational Research Center, ALS TDI is able to partner with ALS patients to spearhead discovery of effective therapies for this devastating disease.

Translational research has emerged as an increasingly important component of drug discovery in recent years. The main focus of translational research is to obtain an in-depth understanding of mechanisms that drive human disease and to integrate this information into all stages of drug development from early discovery to clinical trials.

“I’m so proud of the work being done at the Augie’s Quest Translational Research Center at ALS TDI. We speak to newly diagnosed families every week who are hoping for a cure, and we’re focused on funding the best science to make that a reality in the future.” – Augie Nieto

Today, there is real hope like never before. We remain committed to finding a cure for ALS and your generous donation helps fast-track effective treatments and an ultimate cure for this devastating disease.

Augie Nieto: From Diagnosis to Augie’s Quest

By Augie, Research

A different kind of innovator

When we envision a titan of industry, we often think of a serious, iron-fisted business mogul residing behind a long, polished table in a high-rise boardroom overlooking the world, disconnected from the everyday struggles and realities of the average person.

Augie Nieto shatters this mythological ideation of yesteryear’s out-of-touch tycoon with just a crack of his mischievous smile. He’s at the top of a very small class of unique, powerful, and innovative entrepreneurs who are successfully running their endeavors with a hands-on approach, creating and collaborating with people face-to-face in the most authentic of new business and philanthropic models.

With an ever-present twinkle in his eyes, Augie is the leader of this new school of tough-as-nails, hardworking, yet compassionate and empathetic CEOs and leaders with a certain sense of ethos not evident in previous generations. 

However, he’s extremely different from his counterparts.

Augie can’t walk.  

He can’t talk.

He can’t even pound his fist on that iconic boardroom table.

Augie has late-stage Amyotrophic Lateral Sclerosis, most commonly known as ALS.  

ALS meets its match in Augie

That’s not entirely what makes Augie stand out from some of our most influential leaders. While Augie is no longer a mover and shaker in a literal sense, he is one of the most motivated and enigmatic people you will ever meet. 

You can see it in his eyes and the way he looks at a complicated problem, like a strategy in a chess game, where he’s working out his next move in his head.  Augie still does what Augie does best: he’s a thinker and creator. These immutable characteristics of Augie’s energetic mind are what fuels his tireless work and the incredible path he’s taken since his devastating ALS diagnosis in 2005 when he was at the top of his professional and personal game

Augie was in the prime of his life, at an ageless 47 years old, when this strong, adventurous, competitive specimen of a man started experiencing the early tell-tale symptoms of ALS. He and those around him were shocked to see his fit, toned, and youthful body reject the simplest of physical commands. To imagine his boundless physical energy and zest for outdoor adventure, travel, and his everyday freedom slipping away was immeasurable and would normally sink the strongest of wills.

However, Augie isn’t like most people. ALS picked a fight with the wrong guy.  

From entrepreneur to warrior philanthropist

Augie’s close friends and allies can all attest that ALS has met its match in Augie. His sheer will, competitive spirit, cutting sense of humor, and sharp mind that solved countless complicated business problems took over as Augie shifted gears to take on the toughest fight for his life and the lives of thousands of people living with ALS.

Augie has always been on some kind of quest. From his early, self-starter days launching a popular line of gym and fitness equipment under the renowned Lifecycle brand to ultimately becoming the founder and President of his very successful umbrella company, Life Fitness, Augie has always been a leader in lifestyle, exercise, fitness, and the pursuit of better health. He’s the original social influencer and branding guru of the health and fitness industry. 

By design, Augie was the perfect candidate to take on a disease like ALS.

After learning the stark reality that ALS is not only incurable but ranks extremely low in widespread support and research for treatment and cures, Augie set his sights on defeating his disease with the gusto and business acumen that launched so many successful past endeavors. With the same charisma and drive Augie brought to running his successful business and boardrooms, along with his deep network of close friends and influential connections, Augie began his new life’s work. He co-founded Augie’s Quest to Cure ALS and partnered with the ALS Therapy Development Institute in a multi-pronged attack on ALS. 

From the very start, Augie’s mission was clear and simple: to find a cure for ALS. Augie quickly learned that to find a cure, he needed to raise immediate funds and an urgent awareness to launch a full-scale revolution in ALS research. To learn that ALS was not only incurable but underfunded just wasn’t the answer Augie was looking for.

A game-changer in the fight against ALS

Early in his fight, Augie realized that awareness wasn’t going to be enough to change the abysmal ALS research landscape. It was going to take money —  a lot of money. 

With a powerful cadre of long-time friends, family, and business innovators, Augie founded one of the most effective and creative teams to face fundraising for ALS full-time. From events, corporate sponsorships, and good old-fashioned tireless networking and advocating, Augie’s efforts are beginning to pay off in a big way.

Since he first founded Augie’s Quest in 2005, his team has raised millions of dollars strictly for ALS research and still is. With the launch of their funding and support for the Augie’s Quest Translational Research Center at the ALS Therapy Development Institute (ALS TDI) in 2020, Augie’s Quest donors are literally changing the game in the fight against ALS. With their support, this groundbreaking research center is dedicated to continuing the quest by identifying new drugs like AT-1501 to fight ALS.

In keeping with a reputation for results, the Augie’s Quest Translational Research Center has integrated with the ALS TDI’s Precision Medicine Program (PMP), the most comprehensive and longest-running translational research study in ALS. PMP researchers study data collected from the Augie’s Quest Translational Research Center to develop a variety of personalized treatment approaches for individuals with ALS. Partnerships like this will ultimately lead to innovative therapeutic discoveries and new approaches to treating a spectrum of ALS patients.

Augie doesn’t take “no” for an answer

As we’ve come to learn, Augie is a lifelong competitor and doesn’t take “no” for an answer.  It’s that same stubborn tenacity that has allowed him to outlive his ALS diagnostic class of 2005.  Miraculously, he’s the only survivor left from that year. 

Sixteen years after his initial diagnosis, and outliving everyone’s expectations, Augie is still personally involved in the day-to-day work toward the next promising ALS treatment. He knows we are very close to a breakthrough. That’s what keeps him going, along with his infectious sense of humor and affinity for telling a good joke or two. 

Yes, Augie may not be able to talk. However, he’s still the most magnetic voice in the room.

To learn how Augie’s sheer will and steadfast belief in what Augie’s Quest is doing, and how that drives him beyond the limits of human strength and endurance, see Augie’s incredible story in the feature film-length documentary “Augie”

Your generous donation to Augie’s Quest will fund the most aggressive and innovative ALS research, moving drugs and possible treatments from the lab to the clinic as quickly as possible.

AT-1501: How Your Support Leads to Breakthrough ALS Treatments

By Research

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.

Lynne cutting celebratory ribbon

Augie’s Quest and ALS Therapy Development Institute: Relationship and Successes

By Augie, Research

Funding the Most Promising Research

It wasn’t long into his diagnosis when Augie Nieto came to understand the bleak reality that ALS lacked the critical support and laser-focused research needed to find treatment and cures. Augie needed to be part of the solution, and believed his entrepreneurial success and strong sphere of influence could be a gamechanger in the ALS community.

Augie wanted to fund research that would help people currently living with the disease – commonly known as translational research. As Augie likes to say, “If your house is on fire, do you ask the firefighters to find the cause – or put it out first?”

One organization performing such research, the ALS Therapy Development Institute (ALS TDI), caught Augie’s attention shortly after the inception of Augie’s Quest. Their mission aligned with his belief that ALS is not an incurable disease — it is an underfunded one. Augie now serves as the Chairman of the Board of Augie’s Quest to Cure ALS and the ALS Therapy Development Institute.

Today, Augie’s Quest is dedicated to finding a cure for ALS by raising the funds and awareness so urgently needed to advance cutting-edge research and fast-track effective treatments. Under Augie’s leadership, over $150 million has been raised for ALS research at ALS TDI, and we won’t stop until we end ALS.

What is ALS TDI?

ALS TDI is the largest research center in the world focused entirely on ALS. Located outside of Boston, their team of experts uses a comprehensive, data-driven approach to treating and ending ALS. Through this approach, ALS TDI has screened more than 400 potential treatments for ALS, more than any other lab in the world.

“ALS TDI is the world’s most transformative medical research institute focused on ALS. We have applied business principles with the leadership of Dr. Fernando Vieira to find a cure for ALS! I am proud to lead that effort as its Chairman.” – Augie Nieto

Augie’s Quest Translational Research Center at ALS TDI

In January 2020, the ALS Therapy Development Institute announced the naming of 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 donors committed to finding a cure for ALS.

“As CEO of ALS TDI, and as a person driven by the loss of my best friend to ALS, I pledge my dedication to fulfill our mission. With [donor] support, we will overcome the challenges. We will not stop until we end ALS.” – Fernando Vieira, M.D., CEO and CSO of ALS TDI

To date, neuroscientists and researchers still do not fully understand the mechanisms responsible for the onset and progression of ALS. This knowledge gap presents a significant challenge for ALS drug discovery. The Augie’s Quest Translational Research Center will help close that knowledge gap and strengthen ALS TDI’s research efforts by dissecting mechanisms of clinical ALS and using that knowledge to develop new, more powerful drug discovery platforms and facilitate more effective drug development in ALS.

We are working day in and out to fund the next promising ALS treatments via our research partners at ALS TDI, 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.

Augie's Quest logo

First patient enrolled in Phase 2a clinical trial for AT-1501 today!

By Research

“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.

Novus Therapeutics announced today that the first subject has been enrolled in the Phase 2a clinical trial evaluating AT-1501, the Company’s lead product candidate, in adults with amyotrophic lateral sclerosis (ALS).  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.”

Read the full release from Novus Therapeutics here.

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

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