Augie Nieto, ALS TDI

Augie Nieto (center) at an ALS VIP Benefit event

Augie’s Quest

Editors’ Note

Augie Nieto is the Co-Founder of Life Fitness and was President for nearly 25 years. Currently, he is the Chairman of Octane Fitness. He serves as an operating advisor to North Castle Partners, and is on the board of Curves as well as Jenny Craig. Nieto is Chairman of the Board of the ALS Therapy Development Institute in Cambridge, Massachusetts. He is the Chief Inspirational Officer for Augie’s Quest.

Organization Brief

The purpose of Augie’s Quest (augiesquest.org) has always been to fund research and drug development aimed at ending ALS, Lou Gehrig’s disease. Since 2007, Augie’s Quest has raised over $44 million in support of finding effective ALS treatments, making it the largest individual fundraising program for ALS. All funds raised by Augie’s Quest benefit ALS TDI, the world’s largest ALS-dedicated drug development organization. Support comes from a huge network of national events and promotions, including the BASH for Augie’s Quest, Tradition of Hope Gala, and widely successful campaigns within the very generous fitness industry, as well as a hugely innovative joint-fundraising initiative called the ClubCorp Charity Classic, which benefits Augie’s Quest and other local charities. The ALS Therapy Development Institute (ALS TDI) is the world’s leader in ALS research. Their mission is to discover and develop effective treatments to end ALS.

Would you discuss the vision and mission for Augie’s Quest?

Augie’s Quest was created to fund the research to find a cure for ALS. ALS is not an incurable disease, but an underfunded one. Augie’s Quest is an aggressive, cure-driven effort focused on finding cures and treatments for ALS. At the time of my diagnosis, most academic labs were researching the cause of ALS. I didn’t care what caused it and wanted to focus on finding a treatment. I’m focused on finding a treatment for people living with ALS today.

Where are we today in the fight against ALS and what more needs to be done to battle this disease?

Each of us has a 1 in 300 chance of developing ALS in our lifetime. Thankfully, we are closer than we ever have been before in developing truly effective treatments for ALS and changing the reality of this disease from unbeatable to treatable. This is because we know more about what this disease is doing in the body, how it attacks, and how to attack back. We have built the world’s most efficient drug development machine for ALS at the ALS Therapy Development Institute and have led the way in ALS research. We are innovating new business models to bring potential treatments across the “valley of death” as well as enrolling nearly 300 people into the world’s first precision medicine program for ALS.

Every 90 minutes, someone is diagnosed with ALS in the U.S. and there are more than half a million people like me worldwide battling this disease every single day. What I believe needs to occur is to unify the entire ALS community behind beating this disease. Our institute has proven that it can smartly invest donations quickly into projects that place today’s person with ALS at the center. That is what needs to continue to be funded at a higher and higher level if we are going to win the war against ALS.

You have been a leader in creating awareness and a better understanding of ALS. Would you highlight the key programs and events that Augie’s Quest leads in this effort?

I believe sharing my story has brought awareness to the disease and we’ve been privileged to have partners in bringing this story to the masses. There’s an irony to how I spent my life creating products and ways to help people keep their muscles healthy, and now my ability to move is being robbed by ALS. Probably the strongest partnership has been with my good friend Natalie Morales at the Today show who has shared multiple stories with her viewers about my journey. We are so grateful. We are also grateful for support from publications like yours for sharing our story. The fundraising partnerships allow us to reach a new audience as well. The fitness clubs that partner with Augie’s Quest bring our story and our mission to their members – people who may not even know about ALS otherwise.

Augie’s Quest has built partnerships with a number of leading brands. Would you highlight these partnerships and how critical they are to your efforts?

Creating strategic partnerships with leading brands is the key to our success. We aren’t a large nonprofit, but we are a highly effective one and I believe our partners see that and that’s why they engage with us. ClubCorp, the world’s leader in private clubs, has raised over $5.6 million for us and we’re celebrating our 10th year working together though our ClubCorp Charity Classic.

Based on my background, many of our key supporters have been in the fitness industry. We’ve worked with Zumba for over five years, and had great support from leading companies like LA Fitness, IHRSA, Life Fitness, and many more. Last year we partnered for the first time with PepsiCo on an in-store campaign with The Albertson’s Companies. One of our first and most steadfast partners is Shea Homes, the largest privately held home builder in the U.S., and we are thankful for support from Allied Lube, College Works, DriveTime, and more. Of course, we’re always looking for more.

Throughout your career, you have been an entrepreneur and a business leader. Do the skills required to lead in business translate to the work that you are doing with Augie’s Quest?

Absolutely. I think my entrepreneurial background has been instrumental in how we run Augie’s Quest. We run it like a business – we treat our donors like investors and we know they need a return on their investment from an awareness, sales, morale, etc. perspective. We want working with Augie’s Quest to be a good business decision, as well as an excellent charitable one.

Augie’s Quest has made great progress in the fight against ALS. Do you take moments to reflect upon and appreciate the impact that you’ve had and the lives that you have affected?

We need to find a cure for ALS. I have many friends in this fight that are living with ALS, many of them in their 20s and 30s, and I want a cure for them. I have four grandchildren with one more on the way – when I was diagnosed I never thought I’d live this long to see these incredible things happen in my life. I want everyone who is living with ALS to hope for a future and I want to be part of providing that for them. It’s tough to reflect sometimes when there’s still a lot of work to be done.•