Reflections on May’s ALS Awareness Month from our Chief Inspiration Officer

We’ve lived with ALS for 12 years now, getting our diagnosis the Spring of 2005. Amyotrophic Lateral Sclerosis or ALS, also known as Lou Gehrig’s disease, is a neuro-degenerative disease affecting far too many people and families today. Most people with ALS survive 2-5 years after their first symptoms, with no known cure. My wife, Lynne, lovingly and jokingly refers to me as her “freak of nature.” I’m certain my living for more than a decade with this atrocious disease is proving her right — and that’s something I’ve promised to keep doing for as long as possible.

Back then, Lynne and I made the tough decision to really take on ALS, both as a family and in founding Augie’s Quest to Cure ALS. We made a conscious, deliberate choice to live with ALS shortly after our diagnosis. And for me, that meant throwing absolutely everything we’ve got into curing this disease that affects far too many.

When I look back, I’m still shocked by what seems possible today, especially with a promising drug, AT-1501 in the pipeline – a treatment our innovative team of researchers at the ALS Therapy Development Institute is committed to getting out into the marketplace as soon as possible – to help slow the progression of ALS.

Today marks the start of another ALS Awareness Month. But for us, this annual month is different because we are at a tipping point. Through Augie’s Quest, we’re truly defying expectations and changing the course of ALS forever, because simply put: ALS is not an incurable disease; it is only an underfunded one.

That’s where our partners from two very different industries have stepped up – first in fitness, and now following suit in fashion. I’d argue, both were rather unlikely suspects in driving needed funding to effectively seek an ALS cure and cutting-edge research.

ALS steals people’s muscles, and robs them of every benefit exercise provides. That’s why for more than a decade, the fitness industry has refused to accept that fate, rallying hundreds of companies, countless professionals, staff, studio and club members and local communities to take on this disease and unifying cause.

Lucky for us, Augie’s Quest to Cure ALS was the challenge the fitness industry dared to accept 12 years ago, raising a record-breaking $3.5 million in the last year alone and a majority of the more than $56 million total since our inception, as announced and celebrated during the recent International Health, Racquet and Sports Association’s (IHRSA) International Tradeshow and Convention and its BASH for Augie in Los Angeles. Of that total, Orange Theory Fitness raised $2.08 million during its inaugural #IBurn4ALS campaign, lasting just two weeks via 620 of its popular locations. The Orange Theory Fitness program supporting Augie’s Quest was both the largest in-club fundraiser to date and largest single-year campaign ever for the organization.

The fitness industry’s collective competitive spirit and dedication to our cause is changing the landscape of this disease. And its success and momentum is inspiring leading brands from the fashion industry, to join our fight during ALS Awareness month.

Lilly Pulitzer, Rue La La, Ramy Brook, Jack Rogers, Tori Richard, Soludos and Vineyard Vines are devoting a percentage of sales to raise funds and awareness for the disease via special cause promotions month-long. Specifically, each of the brands and their many customers will help the ALS Therapy Development Institute make AT-1501 a reality for so many affected by ALS. The drug is currently in the early stages of clinical trials, but needs additional investments to bring it fully to market.

The fashion industry’s generous efforts this May will help us move one step closer to a world where effective treatments – and even a cure – for ALS are within reach. And these new partners, in large part, found Augie’s Quest and our cause through the efforts of one of our leading ALS ambassadors, volunteer, and a fashion industry and business visionary, Michael “Boomer” Wallace.

Together, we’re looking forward to what now seems possible, and we’re taking on ALS in ways none of us could have predicted. These twelve years have been nothing short of incredible. We can only imagine what the next 12 months will prove.

Thank you, to our friends, to the entire fitness industry and our new fashionable friends for accepting our challenge of Augie’s Quest, for believing in us and our big dream – some 12 years ago – that together we could actually cure ALS.

It isn’t a pipedream anymore.

Augie Nieto

Founder & Chief Inspiration Officer, Augie’s Quest

Chairman ALS Therapy Development Institute

 

Augie Nieto is the successful fitness industry mogul behind Lifecycle, Life Fitness, and Octane Fitness. He was diagnosed with ALS in 2005. With guidance from a team of friends, researchers, and medical experts, Augie came to understand the bleak reality that ALS lacked the critical support or widespread research needed to find treatment and cures. Augie co-founded Augie’s Quest to Cure ALS. Through events, partnerships, and fundraising activities around the globe, Augie continues to drive success by funding cutting edge ALS research at the ALS Therapy Development Institute (ALS TDI) in Cambridge, Massachusetts. Augie’s story will soon be depicted in the feature documentary, “Augie,” a film by award-winning director James Keach and executive producer Eric Carlson. Learn more.