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My brother David…


My brother David and I grew up in Fayetteville, NC through the 70s and 80s. We fought like a lot of siblings do as kids, but always loved each other and had a special bond being raised in a home that was significantly impacted by addiction. We both love cars and music and became especially close with each other once my brother left for college. We had an amazing relationship that allowed us to talk about literally anything without fighting with each other. We looked for ways to support each other as much as we could as we walked through life. Over time we drifted apart a bit as we both got married, had kids, traveled for work, etc., but we always loved each other dearly and cherished the times we did have together. 

In 2017, David had just come to work with me at my company after years of running his own home theater installation business and we were so excited for the future and what we hoped to accomplish together. However, sadly, just a few months later he was diagnosed with ALS in October 2017. In that moment, we committed that we would spend as much time together as we could, that we would finally go race cars (something that we had planned to do in our retirement years), and that if ALS was going to take him, that we would both know that we did as much as we could to fight it!

We made some not so sound financial decisions to buy some 700 horsepower Camaros and hit the track! Little did we know that our passion to race for fun and to make memories would become so much more. Those we met in the racing community were so passionate about helping us and have become some of our most cherished friends. I am so proud of my brother, who he was, and how he inspired so many people to race with him to help others and work towards an end for this horrible disease. You can see the picture from his last day racing in August of 2019 where we worked to use a trilogy breathing machine to try and overcome the heavy g-forces and keep him on track. Sadly, it didn’t work, and he had to stop racing, but it shows you the fight he had in him throughout his battle with ALS! 

My brother was the definition of over achiever throughout his life, so in normal fashion David beat the odds with his long 5+ year fight against ALS. That fight along with who he was as a person inspired so many people on the Racing for ALS team to raise over 1.2 million dollars since June of 2018 in his honor to help fund the fight against ALS, and to help others battling this disease. Dave trusted in the Lord throughout and is in heaven today racing around somewhere! Lord willing, we will continue racing here to help others and continue the work to fund a cure for ALS!

We do that for David because we love him, and because of who he was. He always had a kind word and a wave no matter how he was feeling, and of course a good joke. David loved being able to help others and was truly overwhelmed and beyond appreciative of the love shown to him by those who rallied around him. Even though a thank you doesn’t seem to suffice, we do thank everyone who has been a part of this journey and helped in our fight to #endals!

-Scott Lloyd

It Was The Worst Of Times Becoming The Best Of Times


January 2024 – by Steve Saling

Life is full of surprises. This story has a good ending despite the rough start. The past three years have been horrible for me. The ALS Residence at the Leonard Florence Center for Living (LFCL) is licensed as a nursing home, so they were compelled by law to lock down our house during of the pandemic. We were under the equivalent of house arrest for a year and a half. It was an awful time. We were quarantined and isolated. No friends or family were permitted. All our caregivers wore masks and gowns and face shields. It was dreadful but at least no one got COVID.

The quarantine lockdown was finally over in the summer of 2021 but then the real nightmare began. ALS has long given me a severe drooling problem and my secretions got so bad that I was recommended to get a tracheotomy even though I am fortunate enough to breathe without difficulty 17 years after diagnosis. In August 2021, I got the trach, and it was an easy transition to make since I could still breathe well. The problem was a second surgery to get my feeding tube relocated. I was told that my old stoma would heal quickly. It did not. I had a quarter inch hole in my belly that refused to heal. Any food, water, or medicine that I put in my stomach would come right back out. I was in the hospital for two months being fed intravenously and it was miserable. For the first time in my 17 years of living with ALS, I questioned my willingness to live. It was the lowest point in my life.

The best part of hitting rock bottom is that up is the only way to go. After three or four more

surgeries, the doctors finally closed the hole and I got to go home. There was a little anxiety getting used to sleeping with a ventilator and being suctioned all day long. Fortunately, the ALS Residences at the LFCL, where I live, had just established two houses of 10 people specifically for people living with a ventilator. They hired a bunch of excellent respiratory therapists.

After all my pain and suffering, my life was about to change for the better. One of my RTs was funny and beautiful, and I fell in love with her. More importantly, she fell in love with me. If you know Kate Smith, then you know that she has the energy of 10 people. She quit her job at the ALS Residences so that we could pursue a relationship with no constraints. April 1st will be two years since she left the LFCL so our relationship could blossom. It has blossomed and I knew I’d like to return that commitment by asking her if we can spend the rest of our lives together. She said yes so, we’ve been engaged since New Year’s Eve. We plan to tie the knot this summer. God willing, we will grow old together. I have never been happier. Life is GOOD!

My name is Mike Ibarra, and I am a 31-year-old neurologist. I was feeling on top of the world as I was finishing my medical training, but in March 2023, I was diagnosed with ALS…


the very disease process I had managed countless times. I felt scared, angry, and confused. This was not part of my life plan. Despite feeling lost, I was not alone. My tremendous support group helped pick me up throughout my ALS journey.

My family has been with me from the very start. I know the news hit them as hard as it did me. Upon finding out, my parents moved in with me for two months, despite living on the opposite side of the country. My family has been everything I have needed them to be. Whether it was a shoulder to cry on, someone to vent to, to talk to, or laugh with, my family was there. This support reminded me about the meaning of life and how I wanted to live mine. They have allowed me to find happiness throughout my ALS journey.

I cherish the friends I have and have made. They have been my support along the way and never fail to put a smile on my face. Their genuine compassion has helped me remember the joy in life and remember that I don’t have to live this experience alone. The dinners, drinks, hangouts, and trips will be memories for us all, showing how I was truly able to live. Throughout the chaos, I was able to meet the love of my life. This has been an experience I never knew was possible. One in which not even ALS was going to get between.

Despite living with ALS, I have truly been honored to be a part of this great ALS community of people with ALS, caregivers, supporters, and medical providers. Communities, like the one I made through ALS TDI, have made all this possible. They have given me support and a voice to share my ALS Love Story.  

This is my ALS: A Love Story. It is about my beloved husband, Kevin, the founder and forever captain of Team GiveEmHeller.


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. 

-Lesley Heller

This is my ALS: A Love Story. It’s about my acting coach, John.


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! 

An update from AQ Champion Osiel Mendoza at the Crawford Family Golf Tournament


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! 

Mitch Albom: A big man says goodbye, but his quest must go on


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

Mitch Albom and Augie Nieto.

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.

Red Wings goalie Chris Osgood, left, and Augie Nieto, who is nationally known for his struggles with Lou Gehrig's disease and his efforts to raise millions to fight for a cure, pose with the Stanley Cup after the Wings' win on June 11, 2008.

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 Nieto, with the assistance of a machine, walked his daughter down the aisle.

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.”

Mitch Albom, left, and his wife, Janine, right, pose with Augie Nieto, center, and his wife, Lynne.

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: Check out the latest updates with his charities, books and events at Follow him on Twitter @mitchalbom.

Today is my 65th birthday, and I am thankful to be here.


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

“I love us so much”


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. 

ALS won’t stop and neither will Augie’s Quest

Augie’s Quest to Cure ALS
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