ALS: A LOVE STORY 
"I’m a lucky man. I can’t imagine where I would be without the unconditional love of my incredible soul mate and wife, Lynne. Love is what makes me wake up and want to change the world each day, and it keeps me motivated and focused on my Quest to cure ALS. When I first lost my ability to drive a car and make a phone call, I couldn’t buy Lynne the crazy romantic gift for Valentine’s Day I had in mind, so I wrote her a love letter (who knew she would love it!). This led to Augie's Quest asking others who are on their own ALS journey to share what keeps them inspired, to share their LOVE story. It was and continues to be, incredibly powerful. This February, Augie's Quest is proud to partner with the ALS TDI and I AM ALS to highlight Love. Help us raise ALS awareness by sharing these powerful stories or post your own love story this month and use the hashtag #ALoveStoryALS."
- Augie Nieto
Brandon and Sam Conley
Brandon and Sam met in 2019 in a very serendipitous way. They met at a friend’s birthday and immediately connected. From there, Brandon asked Sam on a hiking date, because as Coloradans they both loved hiking. They spent the day hiking in a beautiful area called "Evergreen". The two had such a great time they didn’t want the day to end. Next, they went brewery hopping in downtown Evergreen, listening to live bands playing oldies, and dancing the night away. The two felt like they had already known each other forever, and they’ve been inseparable ever since!
Their love story continues with tons of adventure. The two fell in love over shared hobbies of skiing, camping, and hiking. The two believe it’s important to have shared activities that you love together. They are best friends and true adventurers together.
Brandon proposed to Sam in Evergreen, CO in December of 2020, in the exact spot where they had their magical first date!
Eight months later Brandon was diagnosed with ALS after months of horrible symptoms. He told Sam she didn’t have to still marry him, as they both knew the severity of ALS progression looked like. But Sam refused and stated she would never leave him. She wanted to go through it together. Instead, she requested they move their wedding date sooner so Brandon could fully enjoy the wedding and they could start this journey together as husband & wife.
They got married this past October 2021 in a beautiful mountain ceremony in Evergreen! They also bought a house in Evergreen, and their story has come full circle! Right where they had their first date! Their dreams together came true, and they are loving every minute. They hope to have a family one day, despite the ALS diagnosis. They make the best of the ALS diagnosis and are stronger together and more in love than ever.
Jamie and Scott Smith
Scott and I met through a mutual friend in 2015 in Kansas City. Not long before that, I had gotten the courage to become a cycling instructor as a little side hustle and creative outlet. On a day at the studio, a fellow instructor, shouted at me, "Hey Jamie! Are you single?" I replied cautiously, "Yes..." She showed me pictures of her friend she wanted to set me up with. I stared at pictures of the most beautiful man I had ever seen. Surely, this was a joke. No guy this good-looking would be a decent guy, right? When I did finally meet Scott, another moment I will never forget, we spoke quietly, intensely, eye contact never breaking. He had the kindest eyes I had ever seen. In an instant, I knew, this guy was one of a kind. This guy was so much more than his looks. After a fairy tale year of dating later, he proposed. A year after that, our fairy tale wedding ensued. I had never known what it meant to be truly loved and truly appreciated in a relationship. Scott showed me the way. Scott is always showing me the way.
A few years later, we started our family. I was so excited to find out Scott was going to be a girl dad. I believed my girls were going to receive the greatest gift, watching him treat their mom in the most wonderful way. Scott prided himself on being the protector, the provider, the leader of our family. I loved watching him in that role. Every day, I knew how lucky I was. In the Fall of 2020, our fairy tale came crashing down. Scott was diagnosed with ALS. We had a 1.5-year-old, and I was 3.5 months pregnant at the time. I had never experienced a "waking nightmare" before, but I finally understood what it meant.
This ALS diagnosis has been beyond terrifying, heartbreaking, and horrific. The most wonderful man I have ever known was stricken with one of the cruelest diseases that exist today. He does not deserve this. We do not deserve this. And as much as it may try, it will not break us. Scott has allowed the world to see inside of this illness through his creativity and writing in the most inspiring way. He does this to spread awareness about a disease that often hides in the shadows as well as leave a legacy for his daughters.
So many people have said, "Scott, I had no idea you were such an incredible writer!" But I knew. When I say this man is multitalented, I mean it. He is a musician, a successful business owner, an exercise expert, an intellectual, a writer, a comedian, a therapist, the list goes on. ALS has robbed him of so many things, but it has allowed a light to shine on just another beautiful piece of him. He continues to fight this disease with determination and grace. He has used his following to help create his #FlexOnALS campaign to raise money for several ALS causes, including ALS TDI. Specifically, Ales for ALS encouraged his beer connoisseur brother to get several breweries in Kansas City on board.
Scott inspires us every day, and remains our leader, our provider, our protector, our most treasured piece of our family - and ALS will never take that away from him. He is my whole heart and the love of my life. Despite ALS, he still makes me feel like the luckiest girl in the world.
Allison and Jeff
There are two things Jeff made me believe in – fate and love at first site. I had just graduated college and was laser-focused on starting my career. Some friends talked me into going to watch a basketball game at a sports bar. I have never been a sports or bar person - but I decided I would go just once to see what all the hype was about. And there he was. Somehow, we sat next to each other and ended up talking to just each other for about five hours. He was older than me and already well on his way in his career in technology. He decided that night that I would be a perfect fit for the company he worked for, so we exchanged phone numbers.
I didn’t sleep a wink that night! I KNEW I had met the man I was going to spend my life with. As it turns out, he felt that same pull. We connected the next day and were together every day following until the day ALS took him from this earth. (over 20 years later!) And yes, I did get the job at the company he worked at! We worked together, lived together, shared friends, shared families, had a child, and lived our lives completely intertwined with one another. True love isn’t perfect. And it isn’t always easy. But if fate chooses it for you – don’t hesitate – take the chance. It. Is. Beautiful. Even if I had known how it would end, I still would have picked him.
The other thing about true love, is losing it is a pain that can literally take your breath away. I remember the day Jeff earned his wings, and I remember looking around me and everything in the world looked different. As if I didn’t recognize anything. Empty. So, so empty. Physical pain is horrible. Emotional pain is exhausting. But the loss of your soul mate? That pain is crushing. Being enough for my child, my family, my friends, my job as only half of “me” was a daunting task. And it took time. Time didn’t “make things easier”, it simply afforded me the space to understand the me I had become. And to determine the me I was going to be.
It has been almost six years since Jeff left, and I’m not gonna lie – I am proud of who I have become, and what I have survived and grown from. I am able to look forward, and to love the life I see in front of me. That doesn’t mean I have forgotten. In fact, looking back will ALWAYS hurt like hell. Grief will forever be a part of who I am now, as it is the partner emotion to LOVE. And as we all know, grief comes in waves – sometimes the waters are calm, and sometimes, unexpectedly, a wave comes and pulls you under. It will always be this way for me now. But how lucky am I to have had a love so strong that it will stay with me forever in the form of grief?
Leaving the ALS community has never been an option for me. I am not the same person that I was when Jeff was here, but I am the person that I need to be now – and until there is a cure for ALS. I have learned so much over the last seven years. I learned how to be a caregiver, I learned how to lose my soul mate, I learned the impacts of that loss on my child, I studied and learned about clinical research, and I learned what it is like to be on the science side of the ALS mystery. Because of this, I know how important the beginning phases of science are to finally finding a cure for this tragic disease.
What we see as a patient community is mainly the experimental therapies that make it to later phases of clinical trials in humans. But so much work happens to get there. There would be no clinical trials without the preclinical work that is done by scientists such as the ones at ALS TDI. Their work not only creates our hope for the future but is what has created the hope we have here and now. The work done by ALS TDI is critical until there is a clear path for eradicating ALS.
Gwen and Nate Petersen
Our story started where all great love stories do: in a bar. I had just relocated from New England to San Francisco and was barely settled in when I took a seat next to Nathan. Unbeknownst to me, the bar had a bit of a rep for subpar customer service, and I quickly got that sense. I wanted to take my business elsewhere but there was this cute guy sitting next to me. The best decision I’ve ever made was to stay.
After almost a decade together and five years living with ALS, Nathan and I still love each other. Phew. We laugh a lot. That being said, I don’t want to minimize how hard ALS is on relationships. Navigating the complexities of double-duty spouse and caregiver is challenging. It tests us. Grateful to my ALS community who gets ‘it’ more than anyone.
To Nathan: Thank you for being my best friend. I wouldn’t want to share this life with anyone else.
Nadia and Sundeep Sethi
Sundeep and I met at UCLA where we were both students. We were standing in line at Taco Bell, buying lunch, and chatting when he gave me his number. I still remember when he called his parents and told them that he had met a girl, and she likes fast food too! A week after we met, he took me out to dinner for my 19th birthday where I kept dropping things off the table out of nervousness. He shared his love of biochemistry with me, and I switched my major. He told me he gave us at least 6 months and I told him I had a feeling it would be longer.
Little did I know that this was the beginning of a big adventure, living in three states over the next 26 years, two kids, a lot of Disney trips, and of course more fast food. We had some incredible times over the years. It brought Sundeep joy that he spent the first few hours of our kids’ lives with them all by himself. He spent hours gaming with our son and dancing with our daughter. He liked to teach them math. He traveled for work often and loved exploring cities around the world and would often call me and tell me how amazing his trip was except that he wished I was there too.
In February of 2019, I will never forget when Sundeep called me from London. He was playing PokemonGo on his phone, it was chilly outside, and one of his thumbs wasn’t moving normally. He was worried, but it was fine once he got out of the cold and warmed up. A few weeks later muscles in his arm started twitching. As a physician, he was immediately very concerned about his symptoms. Only a few months later we faced an ALS diagnosis.
Together, we did everything we could think of to fight ALS. We cried some but laughed so much. We sang bad karaoke together, traveled, and saw friends. Sadly, we were forced to hide from COVID-19 for much of his illness. But our friends took care of us, carrying us through ALS by dropping off food and coffee, and one day even bringing a live concert to our driveway complete with Sundeep’s favorite songs. In late 2020, Sundeep told me had one more trip to take without me, and then he left. We were so sad to lose him to ALS at the end of 2020.
Today, the kids and I are still fighting ALS. Every step we take is a step against ALS and the void it has left in our life. We moved from the Chicago suburbs to Southern California. Together we packed, said goodbye to friends we loved and the home where the kids grew from toddlers to teens. Other families we met who were touched by ALS have become an integral part of our life and are now our family too. We have had the chance to visit some of these amazing people. The kids have connected instantly with some of the families we have finally got to see. One of our favorite times last year was when the kids got to try axe throwing and make cotton candy with the children of another family affected by ALS that they just met. They bonded instantly. There is so much love within this community born out of the most difficult of circumstances.
Today I support ALS TDI by working here. Behind the science at ALS TDI I see the same love and passion that has led me to stay in the ALS fight. I am enormously grateful to be part of the ALS TDI team working to end this terrible disease that steals so much.