It’s been so difficult as a mother to see my child at such a young age to suffer with ALS.  The world just dropped out from underneath us when we received the diagnosis.  We both felt completely alone and overwhelmed by what this diagnosis meant; it was unbelievable.  What does help, however,  is the incredible community of supporters we are finding through it all.   

Getting a diagnosis of ALS at 23 isn’t pleasant. How do you explain what it feels like when your child is diagnosed with a terminal disease?  It’s devastating, and it doesn’t matter what age they are. It was absolute disbelief and anguish that someone as young as Erin, at 23, could get sporadic ALS.  When she was diagnosed, she already was unable to be able to work or take care of herself and she was 2 weeks away from not having anywhere to live. 

Erin went from being in a new career straight out of college, working in remote areas of Nevada, to immediately needing to go on permanent disability and needing care.  In 24 hours, everything changed drastically in both of our lives, and I was in panic mode.  Bringing her home to live with me in California was an easy choice, but I knew that my old house may not be adequate for her needs. One of the very first things I did was measure doorways, hallways, and wheelchair space in my home. I had several contractors come to the house to offer ideas for walk-in showers, expanding walls, removing closets, widening hallways.  Everything was just so overwhelming to us and getting out of control with costs. 

I decided to simplify things and focus on the biggest issues. One was that the bathroom closest to her room was so narrow it was impossible to access in a wheelchair. I wanted to turn that tiny bathroom into something functional and still beautiful for her, that could also be large enough for future needs. 

It was important to me that the room be aesthetically pleasing, and I did not want a sterile looking hospital bathroom as a reminder of her disease. I wanted something that felt like a sanctuary for her.  So, Erin picked out the tile that reminded her of nature and I picked out the shower trim that would be easy for her to turn on. 

It’s crazy how expensive this disease really is. I had heard that in the beginning, but it is completely true, this disease can easily bankrupt you. I had reached out to several foundations/non-profits on behalf of Erin hoping to secure funds to help. In the meantime, Erin had heard of Augie’s Quest to Cure ALS and Live Like Lou through her social media.  She encouraged me to reach out and I’m so glad I did.  I was so excited to find out we had been awarded money towards the project, and it was perfect timing. With this gift, we were able to FINALLY finish the project and are now currently using the bathroom.

“The people at Augie’s Quest and Live Like Lou have made such a difference for us. You’ve taken what is an extremely difficult situation and made it easier for us to live with this disease.”

– Lily Taylor

Long distance running has never been my thing. Ever since my high school football days, lifting weights and keeping the cardio under 30 minutes has been my preferred approach to staying fit. Up until a couple of years ago, running anything further than 5 miles in one go seemed like torture. So it surprised me when Angel reached out about running the NYC Marathon for Augie’s Quest to find a cure for ALS and I didn’t even think twice; the answer was a resounding yes.

ALS first became a part of my life back when I was in college. I had never met Augie at that point. He didn’t know it, but he was a tremendously inspirational figure to me. My dad had told my brothers and me all about him: how he was one of the most active people he knew, a visionary in the fitness industry, and a force to be reckoned with in just about any physical endeavor imaginable. And how his body was taken away from him by the horrible disease, ALS.

Again, I’ve never been much of a long distance runner. The 4-mile route I’d run up and down Foothill Blvd in San Luis Obispo when I was at Cal Poly felt like a marathon to me. But I vividly remember thinking about Augie as I suffered through those 4 miles, especially going up the small hill at the end of the route. Thinking about how he’d trade places with me in a second to be using his body again became my way of powering through any workout when I felt my willpower fading.

Fast forward 4 years later, ALS hit much closer to home. For a few months, my mom had been experiencing an unexplained case of “Drop Foot.” Eventually it took her away from tennis. Mom was a truly amazing tennis player; at one point, she was playing on 6 different teams, she took two of them to the USTA National Finals, and throughout her playing years, she won close to 90% of her matches, all while still being Super Mom. After a number of visits to all sorts of specialists, she was finally referred to a neurologist. Given what I knew about Augie, when I heard the word “Neurologist,” it terrified me. It wasn’t long after we got the diagnosis: Mom had ALS.

The life expectancy of ALS is 2-5 years and has no cure (yet). In many cases, the disease takes its victims in less than 18 months. We were blessed to get 8 cherished years with mom after her diagnosis. She fought hard and she fought beautifully. The easy path would have been to complain and ask “why me?” Instead, she found a profound purpose in her situation. She became a beacon in the San Francisco Bay Area ALS community, counseling dozens of newly diagnosed people whose whole worlds were turned upside down overnight. It’s a terrifyingly lonely feeling being diagnosed with a terminal disease that has no cure (yet!).

She teamed up with Augie, and together, she and my dad relentlessly spread awareness across the Bay Area. Over the course of the past several years, they’ve championed several fundraisers, rallying the generously efficacious community of Silicon Valley, raising millions for Augie’s Quest to find a cure for ALS.

She always knew this wasn’t going to turn into a cure in her lifetime. But that didn’t stop her. She fought, and fought, and fought, up to her final days, so that one day, those that are diagnosed with ALS won’t have to think about how they won’t get to dance with their sons at their wedding or won’t get to see their grandchildren growing up. One day, ALS WILL have a cure! It’s not an incurable disease; it’s simply an underfunded one. Mom believed that in her core and did everything she could to change that.

So when Angel reached out about the NYC Marathon, it was a no-brainer. I’m picking up the torch. Every mile I run I’ll be thinking about Mom and Augie. How they’d have done anything to be using their bodies, powering through the pain. How, despite their failing bodies, they chose to fight. I’ll be running for them, and for the thousands of other courageous people, and their families, who are taking this disease head-on. I’ll be running to kick ALS’s ass so that someday very soon we will find a Cure.

When the neurologists told me I had ALS, I didn’t even know what that was.   I was 23 years old, recently graduated from College and spent every day in remote areas of the desert, helping with environmental conservation.  I honestly thought I was just weak and tired from my grueling schedule.  In fact my friends bought me hand strengtheners as a joke for my birthday.  When I received my diagnosis and the prognosis, I immediately turned to my mother and said I want to take that trip to Europe we have been talking about.  Within 1 month I had my first passport and was on a plane and I haven’t stopped yet.  

I want to leave this world knowing that I had done all I could to see it and appreciate it’s beauty.  People comment a lot on my positive outlook.  I definitely have my bad days, but I always think, if I have limited time left, I don’t want to spend that time feeling sorry for myself.  Incurable means no cure, and if there is nothing I can do about my fate, then I may as well enjoy the days I have.  I want to have an incredibly full life without regrets and I encourage everyone to do the same.  You never know what kind of turn your life might take.

Having non-genetic ALS at 23 is pretty rare so I also decided to share my unfiltered story on social media.  As my story has been viewed, I have been overwhelmed by the positive messages of hope and care from people all over the world.  I want to take this moment to thank them all for helping me spread the word that, any person, at any stage in their life, can get ALS and awareness is the first step in finding/funding a cure.

Erin 

On the evening of October 17th, 2023, I remember sitting at the dinner table with my wife, Cristina, and our son, Jett in the highchair. As Hootie and the Blowfish played in the background, we were attempting to have a conversation about the recent news of baby #2 as we battled through meatballs being thrown at us as if we just hopped off a boat at Normandy. Jett was screaming, laughing, and crying all at the same time with a Picasso of red meat sauce painted on his face. I remember being in that moment and thinking, “This is LIVING.” Everything seemed so perfect to me at that time.

On October 20th, 2023, my life and my family’s life changed forever with an ALS diagnosis from UC – Irvine. With a 2-3 year life expectancy and no cure, every dark thought bounced around my head like a pinball machine on a Friday night in the late 70’s.

“Who is going to raise my children and support my family?”

“Who is going to be there to tell my wife she is loved every night?”

“Who is going to be there to teach my sons life’s most important lessons?”

“How many more months, weeks, days, do I have left with a functioning body?”

These questions continued to riddle through my head for the next two weeks. I was in a deep depression for the first time in my life. I was angry, frustrated, confused, and felt sorry for myself. I couldn’t come to grips with the fact I was just given a death sentence and there was nothing I could ever to do to change that.

Getting punched in the mouth with a terminal illness like ALS, made me realize I needed to punch myself in the mouth for not embracing the word LOVE and cherishing everything and everyone that truly embodies that word for me.

In the last few months, my wife and I started a new tradition. Before we say I love you and give each other a nice smooch and pass out, we share the highlights of our day. The highlights are never work related. They always involve spending time with each other, our son, or doing something we’re truly passionate about.

Shortly after the diagnosis, one of my best friends reached out to me and told me that I will have some bad days, but that it’s critical to focus on stacking good days together and the bad days won’t hurt as much. That stuck with me and quickly migrated to 3 words that I have been living by.

WIN THE DAY.

It’s so easy to get caught up focusing on an outcome and milestones but almost always, that outcome or milestone is out of our control. For an ALS patient right now, that outcome sucks. Like I have been telling my athletes for years, you supply the focus and the effort between the first whistle and the last, and let God determine the outcome. I had the answer this whole time. I just never applied it to my own life.

If I wake up every day to do what I LOVE and cherish my time with the ones I LOVE, I can almost guarantee to WIN THE DAY, every single day. And what a colorful life it is!

Our co-founder Augie Nieto loved big goals – he inspired all of us to dream big, and nothing was more important than tackling the goal of finding effective treatments for ALS. He would be proud to introduce you to Evin, who has a “Big Hairy Audacious Goal” to complete his first Ironman, and raise $1 million for ALS in honor of his beloved father-in-law.

I saw first-hand the support that Chris needed to navigate ALS and redefine his new normal. I’m supporting Augie’s Quest to find a way to support others diagnosed with ALS, as we are dedicated to funding innovative research to find effective treatments and ultimately a cure for this devastating disease.

When I first learned that Chris (my father-in-law) was diagnosed with ALS, I didn’t understand the impact it would have or how quick it would be.

For Chris, everything changed fast!

Within nine months he was in a wheelchair. Soon after that, he needed to be spoon fed and then he lost his ability to speak. In less than two years after being diagnosed, he passed.

Things that we all take for granted, like getting out of bed, going to the bathroom, taking a sip of water, bringing a spoonful of food to your mouth, and communicating freely with friends and loved ones, became impossible. Through it all, he showed strength and determination to embrace his new normal and continue living his life. 

Chris was always the life of the party, even when he was using his Eyegaze as his primary form of communication. In October of 2020 my wife and I, along with her sisters and their families all moved to North Carolina to spend time with Chris. Every weekend we had movie nights and at-home hibachi (we got a hibachi plate for the grill, a hibachi chef’s hat and everything that was needed to reenact the experience). Some of the best nights were when we just hung out and chatted, it felt nostalgic. We were all adults but felt like kids sitting on the floor joking around with Chris watching over us.

Even with all the fond memories, watching Chris go through this was extremely difficult. Chris loved to ride his bike, be at the farm hunting, or out on the water in his boat. ALS robbed him of the things he loved. I knew how much these activities meant to him and I hated that he could no longer enjoy them.

Ever since Chris got sick and started to lose his ability to do the things he loved, I wanted to do something to help. After he passed, I was searching for something to do to honor his legacy and make him proud. After 5 years the idea came to me, or more accurately, it was pushed on me in an inspiring way. 

When I was first asked if I was interested in attempting an Ironman, my answer was ”absolutely not!” I’m a terrible swimmer, I haven’t been on a road bike in over 10 years, and I don’t long distance train for running. I’ve got no business doing an Ironman and it would take me years to prepare for the swim alone…
 
But for some reason the thought kept circling back to me. It would be cool to complete an Ironman. It was such an insane test of endurance and it excited me. More importantly, I knew Chris would be excited about the idea as he competed in triathlons in the late 80’s. 

I thought the 2.4 mile swim would be impossible for me. The thought continued to come up and the final straw was when I started thinking about Chris’s life, and how he loved to be outside on his bike. He would have given anything for a chance to ride his bike one last time, and I was letting my fear of swimming stop me accepting the challenge.

Along with attempting to finish my first Ironman, I am attempting to raise $1m for ALS to support those who don’t have the means to navigate this crippling disease.

He would have given anything for a chance to ride his bike one last time, and I was letting my fear of swimming stop me from accepting the challenge.

Just like Chris was my inspiration to take on this impossible challenge, I hope to inspire others to do the same. Join me on my journey. I’ll be documenting it on social media, leading up to the event on Nov 2nd, 2024 in Panama City Beach,

Follow me on Instagram @evinodriscoll as I honor Chris and train for my first Iron Man.

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

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!

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.  

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