When I met Kevin in 1997, I was immediately taken by his incredible good looks, his larger than life personality, and how loving and kind he was to others. Somehow I got lucky and he thought I was pretty cool too! We had a whirlwind romance, and he moved from Boston to San Francisco to be with me. We quickly bought a house, and got married in our backyard in 1998. This is when our Love Story truly began. We had such a blessed life.
When Kevin was diagnosed with ALS in June 2019, we were so shocked and horrified. Kevin was a very healthy 58 year old, an extremely gifted athlete, a West Point graduate. We had been happily married for 21 years, had two amazing kids and Kevin’s career was at a high point. He was coaching masters swimming, cycling, and competing in triathlons. Life was going along so smoothly. This news brought us to our knees.
At first, we wanted to be private about ALS, go into hiding and just live with the disease quietly. But after much thought and prayer, Kevin decided to change his approach. He began quoting a bible verse daily: “This is the day the Lord has made, let us rejoice and be glad in it.”
It seemed very difficult to imagine rejoicing when facing this disease, but he did. He wanted to take on ALS boldly and with a brave and loving spirit. He got active in the ALS community. He rode in the Napa ALS Ride for the Cure, setting a Ride record for funds raised. He did 15 ALS Ice Bucket Challenges with our kids’ sports communities, helping raise awareness. He joined the Lou Gehrig Day committee and helped get Major League Baseball to adopt an annual Lou Gehrig Day.
But most importantly, he showed his friends and family how to live well, even in the worst of circumstances. Our family motto is GiveEmHeller, which means live big, with courage, and love others in the process. Kevin taught us how to live this way. He desired to leave a legacy that when we face trials, turn it over to the Lord. And face them with courage and love. That is exactly how he spent his 18 months battling ALS.
Kevin inspired us all. He is with us forever, and his legacy lives on.
We continue living his GiveEmHeller spirit every day.
When I was asked to share of few words about one of the most special people in my life, I became very overwhelmed, and of course, if you know me, kind of emotional. Because honestly how can you put one of the most important people in your life into just a few words well, if you’re fortunate enough to know John Kirby, you know you can’t.
John is not only my acting coach; he is my friend and he also become like a father to me that I never had and always needed. Encouraging, devoted, kind, honest and patient, very patient. (The neurosis of actors can be exhausting, ya’ll.) I’d like to believe I get preferential treatment, but the truth is, John is just that generous to and with everyone. He is unstinting with his time, his talents, his Hollywood knowledge, and his amazing intuition (yes, he really did tell me I was going to book This Is Us-AND he has also been right about the men in my life.) I know, impressive, right? That’s John for you, impressing upon us all the ways in which we can do better, be better and love better.
So John, for many reasons and for always, I love you and we love you very much!
Hello everyone, my name is Osiel Mendoza, I’m here tonight with my mom Lisa and my everything Alyssa, and it’s an honor to be here with you all tonight in support of the fight against ALS. I’d like to start by remembering Augie Nieto and all of the family, friends and loved ones that we’ve lost to ALS and are fighting for today. I’d like to thank the Crawford family for their dedication to the ALS community and raising critical funds for research, spearheaded by the amazing team at Augie’s Quest and ALS TDI.
I wanted to give an enormous shoutout to Mike and Brandon for the impact they’ve helped make on my life. When I was diagnosed with ALS in 2016 during my senior year of college at the University of Oregon – Go Ducks! – my body progressed rather quickly and within two years or so I was in need of a wheelchair to get around to do normal daily activity. So for the past four years I’ve had loaned wheelchairs that were handed down to me, and although it wasn’t custom fit to my body, I was still very grateful because it got me from point A to point B. Well everything changed for me on June 2nd, 2023 when my family and I went to the Giants game on Lou Gehrig Day and I was surprised with this brand new, custom fit Permobil wheelchair. This is the best of the best and legitimately feels like I’m sitting in a Rolls Royce or some shit. Not only is it comfortable and so much easier for my caregivers to operate, but it’s also pretty damn fast and can probably beat a lot of you old geezers in a race!
I’ve been outside of my house in this wheelchair more in the past two months than I was nearly all of last year in my old chair. I’m living and experiencing life to the fullest and doing everything possible to not let my limitations prevent me from doing what I love and making incredible memories, just like I am right now with you all. So a big thank you to Mike and Brandon and the Giants organization for advocating on my behalf to receive this chair and changing my life, and while I am extremely blessed and grateful for this chair, damn it if I don’t dream of a world without ALS where I can be able bodied and have the ability to speak my natural voice again, and I have so much faith in Augie’s Quest and ALS TDI to make that a reality one day through their relentless pursuit of developing treatments and cures. And like I said last year, if I’m so blessed to see that day, rest assured that I’ll be having tequila shots and champagne flowing through my feeding tube in celebration. Thank you all for listening and having us here for this special day, much love God bless!
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.
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.
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.
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.
“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 “
