He couldn’t walk, but he moved mountains. He couldn’t speak, but he said so much. He couldn’t write, but he left behind countless messages, and his last one, which appeared a few days ago, showing up in hundreds of email boxes, contained the simple, aching phrase:

Keep me in your heart.

He couldn’t die. That’s what we all thought. And yet he did. Quietly, quickly, from pneumonia, last week, with his wife, Lynne, by his side, as she has been by his side almost every minute since ALS struck him 18 years ago. He thought it was over then. So did most people around him. He tried to kill himself. It didn’t work.

Maybe that failed attempt made us think he would outlive us all. I know I felt that way. I know I came to believe that despite the disease’s inevitable decay, the loss of movement in his hands, feet, head, shoulders, his lips falling limp, his vocal cords going silent, that despite all that, Augie Nieto was indestructible.

But none of us are.

Fought like hell for a cure

It is with profound sadness that I share with the passing of a man. A big, big man. Augie Nieto, 65, was a body builder early in his life, and there is a photo of him flexing his muscles, with his wavy hair and dark, Italian looks, and the last thing you would think of is death.

He built an empire in the fitness business, made a ton of money, hung with high-flying friends, traveled the world, smoked cigars. But in his late 40s, while waterskiing in Vietnam, Augie began falling. He had trouble shaving. He came home and got the diagnosis that no one wants to hear.

ALS. Lou Gehrig’s disease.

Degenerative. Progressive. Deadly. Incurable.

The first three adjectives scared the hell out of Augie. But the fourth was unacceptable. Every problem had a solution. That was his mantra. It was how he built Life Fitness into a behemoth, and advised or oversaw major companies like Octane Fitness, Curves, Jenny Craig and Quest Software.

So he began to attack ALS the same way. Build a company. Hire the best people. Pay them well. And tell them they had one product and one product only to pursue.

A cure.

Over the years, even as he was relegated to a wheelchair, even as he could only communicate through a trackball with his big toe and a machine that simulated his voice, Augie built Augie’s Quest (which is what he called the effort) into the world’s most effective private attack on the disease.

He raised over $190 million, all of which went to study, research and development of treatments, not so much to save him — although we all privately wanted that — but to save the next person, so that when they heard “You have ALS,” they didn’t rush to take their life.

A guy like that, directing a $190 million operation from a silent wheelchair, can’t die, right?

Well. “Can’t” and “shouldn’t” are not the same thing.

His mission lives on

I met Augie around 2005, when he asked someone I knew for a copy of my book, “Tuesdays With Morrie,” and I decided to deliver it myself. I am so glad I did.

That began an 18-year friendship that was warm and joyous and uplifting and, I have to admit, rather one-sided. Not because I could walk and Augie couldn’t. But because after our regular visits, in which I did a lot of talking and he occasionally tapped a computer message with his toe, or pushed up the corner of his mouth (laughter) or widened his eyes (delight, surprise) I always left, despite never hearing his voice, feeling I had gotten so much and given so little.

Augie inspired. He motivated. He made you want to be better because he was doing so much with such limitations. When you hugged his limp shoulders or took his manicured hand, you could feel him filling up with the joy of human touch, and you filled up as well.

His huge wheelchair went many places. On boats. On airplanes. To Mexico. To visit his kids. Mike Ilitch once arranged the Stanley Cup to be brought to his house and it wound up in his lap (I was there for that, and so was Chris Osgood, the Wings’ goalie.)

Augie appeared at board meetings and charity fundraisers. Most importantly, in 2014, 10 years after his diagnosis, he harnessed himself to some aluminum scaffolding and “walked” his daughter Lindsay down the aisle of her wedding.

He seemed unsinkable. The Unsinkable Augie Nieto. No matter what setbacks the disease would throw his way, he swatted them back with proper disdain. In his presence, you felt invincible. You could beat anything.

And then, last Thursday, I got the news. Pneumonia had infected his lungs. He’d gone to the hospital. And his battle ended there.

He couldn’t whisper, but he shouted to the hills. He couldn’t lift a finger, but he made the biggest points. His last wish, I am sure, besides health and joy for Lynne, for his four children and his eight grandchildren, was that Augie’s Quest not lose momentum simply because it lost its founder.

“I know that my fight is not over,” he wrote in a message that was constructed before his death. “I have battled ALS for almost 18 years. Physically, ALS has finally taken my body, but my battle to rid the world of this insidious disease will continue.”

So I suppose, since his body has stopped breathing, that this is an obituary. But you don’t write obituaries for people who never die. Augie lives on, his quest lives on, and his life’s passion, that we must, we simply must, find a cure for this terrible disease, lives on as well.

No farewells, then, for the Unsinkable Augie Nieto. Just a lump in the heart, where he wants us to keep him, and where he will always remain.

Contact Mitch Albom: malbom@freepress.com. Check out the latest updates with his charities, books and events at MitchAlbom.com. Follow him on Twitter @mitchalbom.

The past 7 months have been the most difficult of the almost 18 years since I have had ALS. I have felt despair and hopelessness and have gone to some really dark places. 
 
Through it all, Lynne has been by my side and has been my tireless advocate. I love you, Lynne.
 
My corneas are badly scarred due to my inability to blink, even with all the special drops and eye care. It was extremely challenging to see my computer to write to communicate. We were told that our last “Hail Mary pass” was to have cataract surgery. My doctor told us in early December that the surgery was elective and therefore couldn’t happen for a few months. As we were leaving the clinic, Lynne pulled him aside and told him that this was indeed urgent because I could not communicate without it. He took Lynne’s words to heart, and I had the surgery on both of my eyes, and I am encouraged with the outcome. TOUCHDOWN! My vision is about 80% better than before, and I can see without glasses. 
 
This improvement in my vision, and therefore my ability to communicate has given me HOPE. Augie’s Quest to Cure ALS remains my priority, and we are focused on funding the best science to find a CURE for ALS.
 
I am no longer looking at the future as my enemy, and I am looking forward to the things that I can do, and not mourning the things I can’t. Things have come full circle again, and I am thankful for this second (maybe third or fourth!) chance at life!
 
I was thrilled to read the Love Stories shared this month by so many amazing people who happen to be in this “ALS club.” I know having Lynne by my side has made this journey so much easier, and I was inspired by reading the stories from Maddie, Stephen and Rebekah, Jennifer, Brady, Rich and Hallie.

-Augie Nieto

Phil and my love story start like many others… in a bar (16 years ago). We were each with a set of friends, watching the Apple Cup. Luckily, we were both rooting for the same team – Go Huskies! After this night we were basically inseparable.  

Since that night our life has grown with so much love. There are four amazing children who have filled us with so much joy and opportunity to learn more about ourselves and what connects all of us. 

Phil was diagnosed with ALS in August of 2018. Phil took the reins and put all his efforts into advocacy and awareness of ALS. His tenacity is one of his greatest qualities and it has served him well in this new chapter of our lives. I envy his strength and consistently positive attitude. 

Phil and I are that annoying couple that knows what the other is thinking, and can sometimes finish each other’s sentences. While watching TV or out, we know we’ve had the same thought when we turn to look at each other, and give each other “that look.” I love us so much.

Phil has touched my heart and mind in a way that is incomparable to anything. He keeps me sane and on even ground, even though life has thrown us a barricade to climb over. He is truly my other half. 

Stephen Barker Liles, one half of the hit country duo Love and Theft, shares his talent and time with Augie’s Quest to Cure ALS in honor of his beloved mom, Susie Burchett. She lived bravely with ALS from March of 2017 to November of 2019 surrounded by her beloved family and friends. Stephen and his sister, Rebekah, sang Hello goodbye at her service. This beautiful love letter to their mom is their contribution to the Augie’s Quest ALS: A Love Story campaign this year.

Photo taken at the Grand Ole Opry.

Click here to listen to the song: https://rb.gy/pqowfa

Jesse and I met on a blind date in February of 2017. We spent hours talking, laughing, sharing stories, and have spent very few days apart since that day. We were both single parents with two children of our own. During this time, we spent our days creating memories together and with our kids, summer days on the lake, pool days at our home, sports, family trips, and game nights at home. Jesse proposed in December of 2018, and we got married the following July in my parent’s backyard in Gig Harbor, Washington, where I was raised. That day was not only about our love and commitment to each other, but also about the love, connection, and commitment we made to our four children as well. 

We are a blended family of six. We share four children together, all of whom are our entire worlds. Our oldest, Taylor, is 14 years old. She is not only our very loved and precious daughter, she is also an ALS warrior and our family’s hero. Taylor has three younger brothers who are the center of her world: Jake (12), Hudson (10), Wesley (8). 

Taylor was misdiagnosed at 2 years old with Cerebral Palsy. After we noticed significant changes in her speech and mobility, we began to seek out answers as to what was causing these changes. Taylor was losing her strength and ability to walk, swallow and speak and we knew there was something else going on with her health. We spent several years in and out of appointments with no answer as to what may be the cause of her declining health. Finally, in 2018, after completing genetic testing, the results of that test confirmed that Taylor, who was only 9 years old at the time, had Juvenile ALS. 

The reality of ALS, whether it be as the patient, caregiver, or present family member, is incredibly challenging. However, from our personal experience, we also have seen that there is a silver lining to this diagnosis and the reality our family is facing. Many days may be filled with sadness, but many days are also spent seeing and feeling the true value of love, life, laughter, and living with gratitude, regardless of any life circumstance. We do our best as a family to focus on truly soaking in each memory and special moment we can all share together as a family. ALS may be incredibly challenging, but it has also helped our family view life in an entirely new way. A way that brings unique life perspective, hope, gratitude, and more joy for the little things in life, things me may have in the past taken for granted. 

-Maddie Futch

Support Augie’s Quest to Cure ALS by sharing this story or click here https://give.augiesquest.org/MaddieFutch to help us fund ALS Research.

“I am Brandon Conley’s wife, Samantha, and Brandon has been living with ALS for over two years now. We live in Evergreen Colorado, and we used to enjoy all the Colorado sports, activities, and adventures that the mountains bring. Brandon was an avid skier, hiker, camper, and mountaineer. This disease has been the most devastating for someone that was so active and loved outdoor activities. And it has been excruciatingly hard as his wife to watch him lose all his favorite activities. We loved to do all these activities together, which now I just do by myself or not at all because I am a caregiver for Brandon. It’s been a series of losses over and over again. 

Brandon was diagnosed with ALS shortly after we got engaged two years ago. After we received the diagnosis and learned about the very rough and devastating road ahead for ALS patients and their caregivers, Brandon stated he didn’t want me to go through it and said we could call off the engagement. I refused (naturally) and instead, insisted we get married sooner than we had planned so that Brandon could fully enjoy our wedding together. I knew the day I accepted his engagement ring, was the day I made a commitment to be with him forever, no matter the circumstances. So we rushed the wedding, got married two months later, and have been married for one year now! We have learned so much this year about what marriage truly means when they say “through the good and bad” or “in sickness and health”. There have had countless losses and sacrifices over this last year, but we are a team and we love each other. And I know Brandon would do the same for me. 

Brandon is currently on an Extended Access Program (EAP) program for the clinical drug called “Clene”. We have found it to be very helpful with his energy and symptoms. And since it is an EAP program, he can still use holistic medicine and protocols which we have also found to be extremely helpful. Brandon has lost a great deal of mobility throughout his body, mostly his hands, and overall strength. Speech has worsened too. Brandon uses a wheelchair when we need to walk long distances. His ability to walk is slowly declining. But we continue to do our own research and try to live the healthiest lifestyles possible to help with recovery and slow down the progression. 

We both are still working full-time jobs, but it won’t be long before Brandon will have to resign and I will be his full-time caretaker if there are no better treatments available. Brandon already needs help throughout the day with things like getting dressed, getting ready, eating, opening things, and just daily tasks. Luckily, I work from home so I am able to help with his daily needs. We have started fundraising efforts to help with the astronomical cost of ALS, as it isn’t recognized by our healthcare system and is not covered by insurance. We are also starting the process of making our home disability friendly, including wheelchair accessibility, and all the financial stress that it also brings. Fundraising has been the only option to help us with these expenses. 

As a family, we are strong in faith and we have hope for a cure so that no other family has to experience what we are going through. We choose to focus on the positive strides in the ALS community. But we also choose to be activists to promote awareness and change in the healthcare system for neurodegenerative diseases. Brandon and I are currently developing our own non-profit organization to help other families with ALS and it should be official by this time next year (stay tuned!)  We will continue to fight this monster disease for the rest of our lives so that nobody ever has to hear, “you have ALS” ever again. 

Thank you for reading our story and please follow us on social media at @conleyba and @samkellyconley if you would like to continue to follow our story, or read our blog page at “Caring Bridge” for journal updates. You can find that here: https://www.caringbridge.org/visit/conleysfightals “

Growing up, sports were an integral part of my life. I played baseball, basketball, soccer, football and was on the local swim team, too. When I graduated from high school in 2013, the next part of my journey was heading up to the University of Oregon (Go Ducks!) to study Sports Business. While at Oregon, I worked for the athletic department and football team and was also the Vice President of the University’s sports business club, so not to toot my own horn here, but I was doing everything I could to immerse myself in the community, gain experience, and ultimately set myself up for a successful career in sports upon graduation.

However, during Fall term of my senior year, I began to experience random muscle fatigue, muscle twitches, and cramps in my arms and legs. At first, I thought maybe I  just didn’t get enough sleep the night before or didn’t get proper nutrition and hydration for the day. But as days and weeks passed, it continued. Normal things like taking notes in class, walking to and from campus, and working out at the gym started to become progressively difficult. As it became obvious that something was off with my body, I made an appointment to see a physician about my symptoms. After that initial visit, I was quickly referred to see a neurologist and two weeks later was doing a series of medical tests to figure out what was going on. I scheduled a follow up appointment on October 25th, 2016. Within five minutes of walking in the doctor’s office, I was told by the neurologist that I have ALS, or better known as Lou Gehrig’s disease, and I have 2 to 5 years to live. And just like that, my entire life flashed before my eyes as I was told that besides a pill that could potentially extend my life by 6 months, there are no other effective treatments or cures to give myself a fighting chance, and to go home to prepare for the road ahead. To give some perspective, the legend Lou Gehrig was diagnosed with ALS 83 years ago, and yet, people who are being diagnosed with ALS today are still given the same prognosis of 2 to 5 years. I don’t know about you, but to me that is simply unacceptable.

The average age for an ALS diagnosis is 55. I was 21 years old when diagnosed, which goes to show that ALS can affect anyone at any time. It is a relentless disease that has deteriorated every voluntary muscle in my body, leaving me physically paralyzed, and unable to talk, eat, or breathe on my own. I actually wrote this on an iPad that I control with my eye movements, pretty cool shit to be honest. I’m blessed to have technology like this which gives me so much independence and the ability to communicate and interact with others. I’ve even developed a nice game of chess because I’m a competitive guy at heart, and I don’t let my physical limitations get in the way of that. (If anyone here plays chess and ever wants to get their ass kicked in a game online by a guy who plays with his eyes, just let me know.) 

Even though my diagnosis threw a major twelve six curveball on the plans I had in life, I haven’t let it stop me from pursuing my passions, creating lifelong memories with my family and friends, and advocating to make a difference in the fight against ALS, especially through the power of sport. As difficult as this disease is, the power of the ALS community is something that I’m continuously inspired by and I deeply value the relationships I’ve made with other people living with ALS and their families, because we fight for each other and in memory of those we’ve lost, like Dwight Clark, Pete Frates, Pat Quinn, Gretchen Piscotty, Kevin Heller, and so many others who were taken too soon. 

Because of science and cutting edge research, I am confident that one day we will end ALS. When that day comes, if I’m so blessed to be here to witness it, you can rest assured that I will be having tequila shots and champagne through my feeding tube in celebration, what a mixture. I’ve supported Augie’s Quest and the research at ALS TDI ever since I was diagnosed, and I have so much faith in the important and urgent work they do day in and day out to find treatments and cures for ALS. As many of you may know, ALS takes a village and I’m lucky to be surrounded by so much love and care that my family and caregivers provide me to ensure that I live a meaningful and high quality life. 

I’ll leave you with my favorite quote from one of my idols, Steve Gleason, “I believe that my future will be greater than my past.” Every day is a battle, but that quote is a mindset I strive to live by and it keeps me pushing forward every day. Thank you to each and every one of you for being here and being our teammates in the fight against ALS. You are truly making a difference and that gives me so much hope and motivation to keep going. God bless.

As we celebrate the 4^th of July, the birth of America’s Independence, it brings to mind the endless journeys of Veterans who have supported our country with deep sacrifices.  These sacrifices have redefined what Independence means to America. 

It is amazing to think about the vision of our forefathers when they established the United States Military Academy 26 years after 1776.  USMA was established in 1802 and has produced countless military leaders, business executives and politicians. West Point’s curriculum demands academic excellence, demands physical and mental toughness, and develops future leaders.  More importantly West Point has produced thousands of men and women who following their service, live lives of great courage and character. 

After graduation from West Point, my education continued with Airborne school, Jumpmaster school, Ranger training and Basic Officers Courses and then, deployment.

I reported to the 82^nd Airborne Division and received orders for Vietnam, 1968-1969. It is in this war that the Class of 1967 lost 30 classmates KIA, more than any class.  This was about 5% of our graduating class who gave the ultimate sacrifice in service to our country.  I keep a photograph of their names which are etched into a window at West Point.

How did all this experience impact my journey with ALS?

First, I still maintain the mental toughness from all my training and experiences.  I believe that there is no problem too difficult to figure out.  Next, I developed a support team who have assisted me in this journey and I continue to do extensive research.  I got involved to provide meaningful help where I could make a difference for other ALS patients.

I always try to keep a sense of humor.  Most importantly, I am fortunate to be surrounded by family and friends who have supported me completely.

I support Augie’s Quest because of their focus, their leadership, and the results they have accomplished.  I realize that everyone is searching for the “cure” but my discussions with their leadership team about focusing on ways to slow the progression illustrates their commitment to a broader approach for ALS patients.

Let’s continue the fight to find a cure.

Ed Beck

USMA Class of 1967

In the Fall of 2019, I attended a cross-fit affiliate gathering in Whistler, Canada. During a workout I developed some problems with knee/shin/foot pain in my right leg, which lasted a couple of days. I realized that my right foot didn’t move as usual. A doctor at the gym suggested I see a neurologist to get it checked out…he suspected drop foot.  After a battery of tests, two spinal surgeries and an eight-day hospital stay, I had lost 20 pounds in weight, and my right leg had dramatically decreased in size and strength.  This was a far cry from my top lifting days where routinely squatted 300+ pounds and deadlifted over 400lbs!  I knew something was wrong.

After more tests with a new neurologist, we narrowed down the list to include ALS.  Then it was a waiting game to get a definite diagnosis, and everyone that knows me knows that I’m not a patient person, so it was quite stressful!  Even when you know it’s coming, the ALS diagnosis is still shocking, especially for those of us who were extremely active.  I’m determined to continue moving my body, working out seven days a week. 

I used to be a somewhat pudgy teenager who was more interested in cake in my early years. Then in May 1982 all that changed when a friend of mine opened a gym in my hometown back in Germany.  Working out then dominated my life in some shape or form over the next 40 years!  I joined the German Army, was stationed in Munich (in a motorized infantry battalion) and joined a gym that had a bunch of competitive bodybuilders as members. A few years later, I competed in my first shows, making it to the Finals in the German Nationals in 1990. 

While working as a trainer at Joe Weider’s Bodybuilding & Fitness Camp at Loyola University in Los Angeles, I met my wife Robin, and we settled in Cincinnati.   In 1998 I won the Overall titles in the Mr. Northern Kentucky and Mr. Cincinnati and competed in several National shows. Later, I opened my gym, called ‘Das Gym’, and eventually  became hooked on CrossFit while searching for ideas to run group classes, and became affiliated that year (at that point there were less than 100 Cross Fit gyms in the world, now it’s upwards of 15,000!). I was lucky enough to compete at the Cross Fit Games, and also in a number of regional and local competitions. 

Currently, I’m still working five days a week as a fitness assistant (I sold my gym April 2021), running classes and overseeing 2 gyms.  It’s not as much as I’m used to doing but as Augie says, “I redefine normal every day” and “celebrate what I can do instead of focusing on what I can’t”!

‘meet me at the belmont’ a sign and idiom that we’d love to say was born because of Chris and I—for it’s where we first met; at the Belmont, on La Cienega Blvd, in West Hollywood, California about 9 years ago…

I lived on Ozeta Terrace just up the hill from the Iconic ‘Sunset Strip’, Sunset Blvd in West Hollywood, on this sweet corner in a little studio track of buildings that overlooked the city, and had been there for years. It was an eclectic community of transplants from all walks of life, who came to Los Angeles to pursue dreams of being musicians, artists, actors and models.

While out and about with my neighbor, we found ourselves at the Belmont where Chris was there hangin’ with his friends… My neighbor introduced us, and we had some funny conversations; the first of which involved Chris grabbing my calf and asking me: “dancer or gymnast?” I surprisingly, and curiously answered: “Dancer”. Naturally, we spent the rest of the night bonding over stories highlighting our mutual respect for each other and the dedication and love we shared for both hockey and dance—that shaped so many years of our lives.

I knew Chris was full of character and life when I saw his forest green 90’s Honda, and we had to get in through the drivers side as the passenger door was stuck shut. And that Honda was a character of its own written into Chris’ colorful story, and adventures to and around LA (including the first place we drove to). Chris had learned to skate from his grandmother when he was a youngster, and immediately, fiercely skated across the ice. His love of skating evolved into playing hockey when a family friend of his, Bob Cielo introduced him to the game. He grew up traveling from rink to rink with his family, played in many prestigious hockey events, was drafted 125th overall by the Calgary Flames, went on to play for Notre Dame University on a full scholarship, and played professionally with various South, and East Coast Leagues.

For Chris, life branched in many directions before he rooted in Los Angeles for 17 years. He was discovered by Calvin Klein while telling a dramatic story during brunch in New York City. This happenstance encounter launched his global modeling career starting with his first campaign alongside Kate Moss. His modeling career and charismatic personality led him to acting and ultimately writing. Chris’ life was full of wild adventures that brought him all over the world. And our love of travel was also mutual and grew over the years while we both pursued our Arts in Los Angeles.

A fond memory we share was our first camping trip together for his birthday, early on in our relationship. It was April, and I went to REI and picked up some basic camping gear for him in hopes that he would love camping in nature as much as I did. We headed up Highway 395 (what would later become one of our favorite routes), and on to Yosemite. I had a backup campground booked as I chanced one of Wiwona’s walk-up sites being free. And it was! So we took out his new tent… and I busted the tent pole! It was an adventure back down to the only local camping store to find shelter in a new tent. We made it back before sundown with a Coleman and a tricky zipper to keep us humored. Despite the contrast, it was a perfect trip, and a true foreshadowing of our lives ahead in many ways; of us learning from the seasons, and seeking the silver linings amidst the obstacles in our wild adventures to come.

Our love of spending time outside in nature, often wilderness camping with our dog Lyla, grew over the years, as did our many stories. We moved around Los Angeles (West Hollywood, Topanga Canyon, and Hermosa Beach) living out our dreams as artists, actors, writer(s) with all of the challenges, lessons, and colors that came along with those passionate choices.

Mainly, the most life-altering thus far—the day Christopher was diagnosed with ALS. We were in shock on April 3rd of 2019, and our whole lives changed in an instant. Now Christopher navigates the full spectrum of ALS—physically, emotionally, mentally, and spiritually. And I am along for that soul-shaking ride; learning, expanding, loving, evermore.

Our silver lining throughout this journey, has been the community we have both met and have come to know deeper; some of the most heart-lead beauties we’ve ever been blessed to encounter. We are eternally grateful for these connections, and their interconnectedness with each other and the world. From this depth, Chris’ legacy continues with the incarnation of Halt ALS, his growing foundation aspiring to bring about more awareness of ALS and ultimately contribute to Halting it! ALS (as you may well know) has affected our lives in profound ways, of which amidst this rollercoaster, has led us to ultimately love deeper through it all. As one of our cherished authors, Kahlil Gibran so apropos wrote: “For love if it finds you worthy, directs your course…”