I remember the first time I met Augie Nieto in the summer of 1991 at a trade show in Chicago. I walked away from that encounter thinking to myself — “what a dynamo!” His confidence showed in his stride, his powerful handshake and his outgoing demeanor. But most of all, I remember how his gaze was so intense you felt he could look right through you.

Fast forward a few years and I came to Life Fitness for what would be the first of three separate careers with the company, but it was while at another company that I got a call from Lynne and Augie together. The tone clearly had changed, something wasn’t quite right. To begin with, I never spoke on the phone with both of them at the same time beyond Lynne yelling hello into the phone and surely never heard Augie so subdued.

As they began to walk me through an abbreviated version of how Augie was experiencing muscle weakness, traveled all over the country to meet with specialists and the constant hope for answers that never came, I found myself beginning to worry where this was all headed. ALS wasn’t what I’d expected them to announce, but I knew exactly what those three letters spelled. It was beyond my ability to completely assimilate on the entirety of the situation on that call.

When people ask me to describe Augie, I respond — “which one?” I spent years admiring the first version of the man that I call my mentor; the person I describe as being known in the fitness community by a single name – AUGIE! That version was bigger than life, filled with bravado and even an arrogance to those that weren’t close enough to him to see how generous he was. He was as much of a celebrity in the fitness industry, as anyone had ever been. In a word he was bold.

The second version is far different than the original, as he has channeled all his passion and exceptional drive into a singular goal to find a cure for ALS. This “new and improved” Augie has operated as a hero for an underfunded and under-researched disease that has historically carried a death sentence with it. This version of Augie created Augie’s Quest, an inspiring charity that has raised hundreds of millions of dollars to fund ALS research with successful results, providing a beacon of hope for those living with ALS and their loved ones.

Augie is the reason why I and hundreds of others volunteer our time, fundraise, spread the word about the success of their drug development and pray every day for better times ahead for those being challenged by this insidious disease.

They may call it Lou Gehrig disease, but someday it will be known as Augie’s cure!

May is ALS Awareness Month. In May alone, 496 people will be diagnosed with ALS and will be challenged to choose how they spend their remaining years. Every day, Augie chooses to celebrate and focus on what he can do rather than what he can’t. He has shifted from finding fitness solutions to improve lives, to finding a cure to save lives – and he’s still keeping busy – working to achieve that goal.

Augie’s Quest to Cure ALS is dedicated to changing the experience of people living with ALS. With Augie’s Quest, ALS doesn’t stand a fighting chance. Support our Quest to find a cure by making a donation.

The Bellina Family

When you close your eyes and picture a Zumba® fitness class, you probably see a group of people who have showed up to dance and sweat together. There’s loud music, flashing lights and a positive energy zipping around the room.

For Caitlin Bellina, Zumba® is more than that. It’s her sanity.

“I had no idea how important this workout class would become to me.”

In 2014, Caitlin’s husband Matt, a retired U.S. Navy pilot was diagnosed with ALS. Together they have three small boys. Shortly after Matt’s diagnosis, Caitlin took her first Zumba class.

“Being the caregiver of a person suffering from ALS can be draining physically, but more so emotionally. There have been days where the promise of a 5 o’clock Zumba® class with my girlfriends for an hour has been the only thing holding me together.”

Every 90 minutes, someone is diagnosed with ALS. The cause of ALS is unknown, and scientists do not yet know why ALS strikes some and not others. This is why the mission of Augie’s Quest to raise critical funds and awareness to advance cutting-edge research, fast-track effective treatments, and ultimately, find a cure for ALS is so urgent.

Join Caitlin and the Augie’s Quest team in partnership with AV Now for a heart-pumping and inspiring 90 minute Zumba® and Strong Nation™ class on May 8, 2021, with ZES™ Loretta Bates! Registration is free, but you can help make an impact by making a donation to fund ALS research.

There are thousands of families like The Bellina’s that depend on research to continue through the good times and the bad, so that one day in our future they can dance with their loved ones again. Let’s make every beat count as we fight for a cure for ALS.

Have you ever had that dream where you try and run but your legs hardly move? While you remain paralyzed despite your best efforts to flee, there’s inevitably some-“thing” gaining ground on you. Always gaining ground. Until… well, until you presumably wake up.

Evidently, nightmares such as this are common. So much so that there’s been much debate about the meaning behind the phenomena. There are theories about sleep stages where you are relatively paralyzed, thus leading to a disconnect during one of these movement focused fantasies. Or that dreams themselves actually play out in slow motion all the time. More symbolic, Freudian even, perhaps there’s significant resistance in your waking life.

It’s all a moot point though. This isn’t a dream. This is my existence. This is my life with ALS. 

When you try and try and try yet only sink further into the quicksand. It’s a helpless feeling that’s not unique to what I’m going through, but unparalleled in regards to strategy.

I’ve been obsessed with cracking this impenetrable nut that is ALS. But much like that aforementioned odd, viscosity morphing sludge; the harder I seem to fight, the more trapped I become.

My progression in regards to muscle weakness has only accelerated over the past two months. Despite my impeccable regimen, there hasn’t been one thing I’ve added that appears to slow the degeneration down. This was not how it was supposed to play out. All the research. My consistency and discipline. A timely diagnosis. Doesn’t the universe know that I’m the guy who beats ALS?!

This new concept of therapeutic exercise has also been a bit of a moving target. My muscles simply will not adapt or recover the same as before. I’m constantly walking the tightrope regarding my routine as too much intensity or volume can do irreversible damage. Too little however, and I quickly lose the fitness I’ve built up over a lifetime. It all fits the quicksand narrative perfectly as ALS is a challenge one cannot outwork or simply “push through.”

I believe that it’s only a matter of time before I figure this all out. I still have a few more bullets in the chamber and an ace up my sleeve to boot. Though we are tired emotionally and physically, Jamie and I are nowhere near exhausted in our options.

While ALS is doing what it does so well (giving our plans the middle finger) we are regrouping for our next all-out assault. In the meantime we will have to fight smarter because no one in the history of this disease could possibly go any harder than we already are.

Aligning myself with Augie’s Quest was a no brainer for two reasons. First, we share the same mission to bring the benefits of health and exercise into our clients’ lives. There’s an added irony to ALS afflicting both Augie and I, given our primal nature to be active. Second, if we don’t find a cure we are most certainly going to die. Finding a cure, however, is highly unlikely unless we find a way to get more resources to research. And as it happens, research is Augie’s Quest’s top priority.

Because you know what I want even more than a power wheelchair? A chance to see my two little angels grow up.

Let’s get it together, let’s find a cure for ALS.

My friends at Life Fitness first introduced us to Scott Smith, a personal trainer, fitness advocate and young father from Kansas City. Like me, fitness wasn’t just his priority, it was his full time career. He is tackling his ALS diagnosis head on – joining forces with multiple ALS groups and advocating for better treatments. His story hit so close to home for me, and I’m thankful he’s agreed to share it with you. – Augie Nieto

Augie’s Quest to Cure ALS is dedicated to changing the experience of people living with ALS. Today, there is real hope, like never before. With Augie’s Quest, ALS doesn’t stand a fighting chance. Support our Quest to find a cure by making a donation.

Dad Our Warrior

It’s now been over 7 years since we lost our dad “Sandy Cameron” to ALS. Boy was he a proud Scotsman. He was long on discipline and proud of his military service in Canada. Neither Iain or I followed in his footsteps but we were gifted (😊) with his passion to ne’r back down. He dealt with his diagnosis the same way. We were so fortunate to be able to spend time with dad over his last few months… so glad that we did… the talks and hugs were heartfelt and real. A lot of previously unspoken pain dissipated and was forever healed. We now carry his memory and his lion’s heart in our support of Augies Quest to help find a cure.

Iain Duncan and Scott Cameron

 

The day we first met we were in Manchester, New Hampshire. I had just arrived at the Obama NH campaign headquarters. Brian had been part of the New Hampshire campaign staff for a while as political director. I met the team at a staff picnic in the park. Brian was playing a game of catch, and my first reaction was: there are cute guys here! I noticed him right away.

I was the communications director for the NH campaign and that meant I worked closely with Brian in his role as political director. We were paired up often for work. When you work on a campaign, you work from the wee hours of the morning to late into the evening. In those beginning days before we had a real headquarter building, we worked out of what we called the “hoffice” (the home office) because it was one of the group homes where seven of the staff members lived, including Brian. One day, maybe about a month into working together, Brian and I were sitting with our laptops at the kitchen table across from each other. I sent him a message saying he should date me because I’m really funny. He burst out laughing.

Our first date we went to a restaurant and Brian showed up an hour late! Of course he blamed work. I remember the server looking at him when he finally showed — she looked back and forth from me to him and said to him: “You better be worth it.”

We were working constantly but at the end of day, we were ready to decompress together at a local watering hole. We worked hard, but gosh we had so much fun. For both of us on the Obama campaign, we had this feeling like we were part of history and also making history together — it was such an energizing and fun period.

After Obama won the election, Brian had the opportunity to work within the administration right away, but decided to go practice as an attorney with Skadden in New York. He had been a summer associate at the law firm before the campaign and they had held the job for him. I had been living and working in DC for years, most recently as Press Secretary for Senator Durbin.

So Brian came to live with me in DC as he had a few months before he started that job. And at the time, I was waiting for the administration transition to be completed. We had this time together, both of us in DC. We went to the inauguration together, the balls and all the celebrating that went into the change of administration. It was a special time.

We had been long distance for about a year and half with Brian in New York and me in DC. At the time I was working as Arne Duncan’s press secretary in the Department of Education. Brian asked for a transfer with his company, Skadden, and was able to move to DC. We were again working and living in DC together.

After about six months, we both ended up moving to work in the White House at the same time. We literally started the same week and just like the campaign days, it was fun to work at the White House together. Our colleagues used to tease Brian and I as we walked laps around the hallways to chat.

After about four years of dating, Brian proposed. We were in Cape Code to attend a friend’s wedding. He proposed on the beach; it was special because this was the place he grew up coming to as a kid. Shortly after we were engaged, I took a job in my hometown of Chicago running an education nonprofit and we did another year of long distance.

We were married in 2013 in an epic wedding in Turkey where both my parents are from. Brian then left his role in the White House and relocated to Chicago through a role with Skadden. We welcomed our first daughter in 2015 and almost exactly two years later our second daughter.

Through a decade and a half, Brian and I have got to experience so much together. We have really been there emotionally and physically for each other, always taking care of each other.

-Sandra

Our Love story begins way back in Costa Rica in 1991.  We met thanks to Hurricane Andrew as Simon (from Miami) was visiting Costa Rica on business.  His stay was fortuitously extended because of weather conditions. Long story short, we were introduced at my grandfather’s 75th birthday and it was love at first sight! Two weeks later, we reunited in Miami and married a year later in October of 1993!

Fast forward to today…27+ years of marital bliss –  most of the time 🙂

We have two amazing kids, Alexandra and Daniel and our four legged child, Samba!  In 2016 we motived something strange was happening with Simon’s foot and our diagnosis came shortly after.  ALS does NOT stop us. We embrace change as it comes. We are blessed to have the unconditional love of family and friends.

We thank God for each day.  Yes, we have hard days but we are reminded each day that we are blessed to have each other, our kids, our family and our friends. F.U. ALS! You have no idea who you are messing with!

XOXOXOXOX,

Diana

“I was made to love you”

We met on the campus at the University of Alabama, dated a bit, and kept in touch after we parted ways.  We reconnected years later in Atlanta.  He joined my church in the morning, and we were engaged in the evening.  He asked me to marry him at a concert under the beautiful stars to one of our favorite artists singing… “I was made to love you.”  Our wedding was a fairy tale, and we will celebrate our 18^th wedding anniversary on February 15.  We are blessed with 5 children.

Kerry was diagnosed with ALS in July of 2015, and ALS has changed our lives tremendously. We don’t say “negatively” because we are truly blessed with a new community of friends to add on to our amazing existing family and friends.  ALS has brought our family closer together. We truly cherish each moment that we have.  We don’t look at how much the disease has robbed us from, but we make each millisecond count.  Our love endureth all things

My friend of six years needed my help and I ran to action with no hesitation. I took on the shared responsibility to help him take care of his mother who has ALS. Her name is Luz Hiraldo. She is 52 years old and she was diagnosed in 2017. You can say we’re cosmic friends. LOL. I help during the day with the sun and he rolls in with the moon. My love has grown over the years for her I see her as my mom. This disease has taken so much from so many, but love will win over this disease. Thank you, Luz, and love you…

-Ameer

 

“My dad, George, loved to run. He ran at twilight, when the chorus frogs sang in the wetland near our house. Sometimes he ran in the morning before work — alone or with friends. Never with music, and always outside. He told me that it was his prayer, his daily meditation. Dad taught me how to breathe when I ran. Slowly in and slowly out at an even tempo. He showed me how breath carries you down the trail, and can buoy you through discomfort and exhaustion.

Breath isn’t just life — it’s gratitude. Every inhale and exhale is a quiet hallelujah for your existence. When my dad could no longer run, he walked with forearm crutches. Each step required so much effort that his face would twist in a pained smile — exhausted from the effort, yet grateful to still be on the move. A year passed this way, before even those steps became too much. In the final months, when a hospital bed occupied the dining room and dad’s clothes swallowed his skeletal frame, he would spend hours on the back porch, eyes tracking the songbirds who congregated at his feeders. Especially then, my dad’s breath carried him through the day.

I write all of this to say that my dad was so much more than this disease or a number. He was a runner. He was a reporter and a writer whose bookshelves were lined with poetry anthologies and David McCullough. He was a deeply spiritual man who saw the beauty in every sunrise, every bird song, every beautifully ripe tomato in his garden. He showed me how to move through this world with such grace, even when the hand you’ve been dealt isn’t what you envisioned. George is everywhere to me. I feel his presence when I walk the dog at dawn and hear Cat Stevens’ “Morning Has Broken.” I think of him when I smell coffee and cinnamon and newsprint. I carry him with me, in each breath and step that I’ve been given.

-Laura

“My mother, Dianne, was diagnosed with ALS in July 2018. She has been in hospice at home for 2+ years and continues to defy all expectations. Her quality of life is currently very low (she is fully non-verbal and non-mobile), yet every person lucky enough to visit leaves feeling as if they’d been enveloped in a warm hug of unconditional love. That is her superpower. People gather around to celebrate her (in person and virtually) yet—even with this ALS reality—she still takes care of us.”

-Elizabeth