This is my ALS: A Love Story. It’s about my love for paragliding.

It took being diagnosed with a terminal illness to finally write my love story. It began when my love for paragliding was being slowly stripped away by the unrelenting progression of ALS. The timing in this universe has never been lost on me.

The same day I started learning to fly, I started losing my ability to walk.

In March of 2022, I decided to take up paragliding. I had always been an adrenaline junkie, and the sport felt like a natural extension of who I already was. On my very first day of training, we were doing ground handling in no-wind conditions. That meant inflating a massive wing over our heads and running as hard as we could to keep it flying, like trying to fly a giant kite without wind. 

After a few inflations, my instructor pulled me aside and asked if there was something wrong with my leg. I told him no, genuinely confused. I had no idea what he meant.

Later that day, I watched a video of myself running. That was the first time I saw it. My right leg was kicking out strangely, but only when I was running hard, only when the wing was pulling against me.

That video planted the first quiet question: Was something happening that I wasn’t aware of yet? That small, seemingly benign limp turned out to be ALS.

In the beginning, my symptoms were minimal. I was lucky. I learned to paraglide with very little interference from that tiny irregularity that only appeared under effort. As my symptoms progressed, I began adapting the way I launched. I relied more on one leg than the other. I adjusted my timing. I compensated.

Until, finally, after about two years of flying, my balance and stability could no longer counter the force of the wing. When I brought it overhead, it would knock me to the ground. That was the moment I hung up my wing. I resigned myself to being landbound, and to the belief that ALS had taken this from me.

After seven months on the sidelines, convinced this part of my life was over, my best friend Bobby, who is also a pilot, made a simple suggestion. What if we tried launching you with a little help? Essentially, he would become my legs and my stability. He would hold me as the wing came up, run for me, and then let me go. Basically… he would throw me off the cliff. I remember thinking, what’s the worst that could happen?

So we started experimenting. We tried new ways of launching and landing that matched what my body could still do. And it worked. That first flight back in the air was the best flight I have ever had. Because I wasn’t just flying. I was reclaiming a part of myself I thought was gone forever.

In the air, I was free from ALS. Free from diagnosis. Free from the physical limits that were slowly closing in on my life.

From then on, I kept flying by letting my friends become my legs. By trusting my community. By leaning into skill, creativity, and love. And I realized something quietly profound: I was not flying because I was strong.

I was flying because I was held.

In early 2025, I was convinced to try adaptive skiing. I only tried it because Challenge Aspen, a nonprofit dedicated to adaptive skiing, made it accessible to me. I was resistant at first. I had been a strong snowboarder my entire life, and I worried it wouldn’t give me the same adrenaline, the same sense of identity. I was wrong.

By the end of that trip, I was bombing down the mountain with my friends and keeping up with them. My cofounder, Iva, was there, and she witnessed the full arc: resistance, curiosity, fear, courage, and finally gratitude. In both the air and on the mountain, I found the same truth.

I had not lost my life.

I had simply found a new way to live it.

After that trip, Iva and I knew we wanted to share this kind of freedom with others facing mobility challenges, just as Challenge Aspen had shared it with me. I knew there was an adaptive trike for tandem paragliding, though I had never seen anyone use one in all my years of flying. So along with Bobby, we decided to change that. We wanted to raise awareness of this option and make it accessible to anyone willing to try, even if they were resistant at first, just like I had been.

That is how Adaptive Impact was born. A nonprofit dedicated to raising awareness of adaptive adventures and providing adaptive experiences to individuals with mobility challenges.

Our first participant was Erin Taylor, a young woman diagnosed with ALS at just 23 years old. I had deep respect for her because she still pursued life with such vigor. I reached out and asked if she would like to try paragliding, and I promised I would make it happen. She said yes without hesitation.

My only fear was this: Maybe flying only felt like freedom to me because it had always been my passion. Maybe it wouldn’t translate the same way to others.

When Erin landed, I asked her how the flight felt. She said something I will never forget. She said, “When I was up there, I thought… ALS? What ALS?”

In that moment, everything crystallized. She had felt it too. Freedom from diagnosis. Freedom from limitation. A reclamation of self.

Since our first flight on April 2, 2025, we have created over forty adaptive experiences, from paragliding to skydiving. People have traveled from all over the United States to fly with us. We have raised funds, built community, and even received a custom Adaptive Impact paragliding wing.

What I have found is this: Adaptive Impact has given me the same freedom that flying once did. By giving others that feeling of freedom, I find my own. And I have fallen in love with sharing it.

So as we like to say: When you can no longer walk,

learn to fly.

And somewhere between losing my legs and finding my wings again,

I realized this was my love story. Not about what ALS took from me.

But about what community, adaptation, courage, and creativity gave back.

“Buzzin” is a term often used in hockey slang. It describes a team playing with energy, pace, intensity, and unity—firing on all cylinders. The phrase “Keep On Buzzin” has evolved into a powerful mantra for those facing tough life challenges. It’s a call to stay energized and motivated, to maintain a positive mindset, and to keep embracing life with joy, love, and gratitude—even in the darkest of times. Figuratively, it’s a reminder to keep pushing forward, to keep fighting, and to never underestimate the power of the human spirit.

Hi, my name is Louis Del Re. Everyone calls me Lou. I am 33 years old. This is my story.

I grew up in Pickering, Ontario, Canada — a town just east of Toronto. I was raised by two incredible, loving parents alongside my two younger brothers. My childhood revolved around sports, I played anything I could get my hands on, but hockey was my sport. As I grew older, hockey became my main focus. I was a late bloomer, which meant I had to work harder than most to compete at a high level. Being smaller was often viewed as a disadvantage, but it forced me to refine other parts of my game — speed, agility, “hockey IQ,” playmaking, and the intangible qualities that truly matter: work ethic, dedication, leadership, and a never-give-up mentality. The greatest gift hockey gave me, however, was the lifelong friendships built along the way.

In 2010, I began my studies at the University of Ottawa. While I wasn’t able to pursue hockey competitively, my identity as an athlete never left me. I played intramural hockey (which turned out to be quite competitive) and rediscovered enjoyment for other sports — volleyball, flag football, and ultimate frisbee. Even at a recreational level, the thrill of competition, physical exertion, winning, hating to lose, and camaraderie with my teammates was addicting. I couldn’t get enough. In 2017, I began my career as a paramedic and later also became a clinical educator. That same summer, I met my future wife, Emily, at a house party hosted by her cousin — who also happened to be my best friend. Her beauty caught my attention immediately. Despite my friends insisting she was out of my league, something inside told me I had to take the chance. So I built up some liquid courage and took my shot. Our connection felt natural and effortless. I knew there was something special.

We started dating later that summer and went on countless adventures together, traveling to more places than I can count. Her love for nature and ability to navigate the outdoors always amazed me. In 2020, we purchased our first home, and in 2021, we welcomed our puppy, Auston, into our family. Life felt full. Purposeful. Complete. It was at an all-time high.

Then, in late 2022, everything changed.

I began noticing subtle changes in my voice. I no longer felt like myself in the gym or on the ice. Soon came muscle fasciculations and visible weakness in my arms and hands. Deep down, I feared what it might be. And in June 2023, at just 30 years old, Emily and I received the diagnosis: ALS.

Facing your mortality at 30 is incomprehensible. It took me to some of the darkest places I’ve ever known and forced me into a level of deep self-reflection I never imagined. Like Augie Nieto, I took immense pride in my athleticism and physical shape. When ALS began stripping those away, I faced a profound identity crisis. Sports had shaped who I was — so I had to ask myself: Who am I now? I often think Augie must have faced — and overcome — that same battle. And through my own journey, I’m learning what he discovered: being an athlete isn’t just about physical ability. It’s a mindset. It lives in your heart and soul, and nothing — not even ALS — can take that away.

My shift in perspective didn’t happen at one particular moment. It came gradually over time, through people, experiences, and moments that helped reshape my outlook. One of those people was Mark Kirton (“Kirts”). He welcomed me into his circle and into the fight against ALS through ALS Action Canada and the ALS Super Fund. He helped me rediscover purpose. I began to see the opportunity in front of me: to inspire others, to lead with vulnerability and humour, and to bring awareness to this disease while living a deeply meaningful life.

When a couple says “I do” to “in sickness and in health”, most would assume the sickness is in the far distant future. On October 4th, 2024, Emily said “I do” to that now. She made the ultimate sacrifice for our love. Teaching me the true meaning of devotion, love and marriage. Not a day goes by where I forget this. Sharing our story has taken us on the most unexpected and beautiful journey — connecting us with incredible people, experiences, and organizations across North America. Today, I proudly serve as a board member of ALS Action Canada, collaborating with others who share the same spirit of collaboration and mission: to end ALS. Our partnership with ALS Therapy Development Institute (ALS TDI), expanding the Ales for ALS initiative to Canada, led to me receiving the 2025 Inaugural Augie Nieto Legacy Award — an honour beyond words and a meaningful connection to a man and organization who paved the path before me.

ALS has brought tremendous pain, loss, grief, and uncertainty — not just to me, but to everyone who loves me. But I do my best to focus on the positives. I search for moments of gratitude. I share what I learn along the way. And I remain grounded in the mantra that guides me forward:

Keep On Buzzin.

Because even in the face of ALS, life is still worth celebrating. Still worth fighting for. Still worth living fully.

Thank you for taking the time to read my story.

With gratitude,
Lou

——————

Instagram:
@biglou92_
@alsactioncanada @alssuperfund

This month, we honor Monique and every parent who fights for more time, more memories, and a future without ALS. Her grit, love, and unshakable will inspire us to push harder for a cure.

One of the most meaningful parts of my ALS journey has been witnessing Lola’s resilience. I waited a year to disclose my diagnosis when she was around eight. I kept it simple and age-appropriate, but she intuitively knew something had changed. As she matured, so did her understanding of the implications of my ALS diagnosis. She’s pretty much rolled with the punches. As a teen, she’s never been embarrassed by my diagnosis. She helps out a lot with care and will be the first person to translate or clarify what I’ve said when someone has a hard time understanding my speech.

I often think about the legacy I want to leave for Lola. When I was working on my doctorate, I read Grit by Angela Duckworth and it changed how I thought about perseverance. That’s what I want to instill in her: a deep grit, a fearless heart, and the courage to dream big, even if failure is part of the process. I want her to value people’s differences, their stories, and to lead with empathy.

These days, I try to create moments that will last a lifetime. When it was time for prom dress shopping, we went all out, ‘Say Yes to the Dress’ style. I completely blew my budget, but that day, that memory? It was worth every cent. I wasn’t promised these milestones. Doctors said I had 2–5 years. That was twelve years ago. I wasn’t supposed to see middle school graduation, let alone prom. But I’m still here and I cherish every moment.

Even on the hardest days, Lola gives me hope. She is my greatest gift. Watching her grow, thrive, and become her own person reassures me that my struggles with this disease haven’t been in vain. 

What I want people to understand is that ALS doesn’t discriminate. I was healthy, then one day, I wasn’t. It deserves the same level of urgency and funding as cancer, because every 90 minutes, someone dies from this horrific disease. I may not live to see a cure, but I fight for the day when no parent has to sit their child down and explain that their body is breaking down, piece by piece.

I believe in this fight. I believe that “incurable is unacceptable.” Like Augie, I believe that with enough attention, funding, and research, we can end ALS. Not just for me, but for Lola, and for every family navigating the impossible.

Dr. Monique Green
Mom, nurse, advocate, and ALS warrior

The insidious onset began in Summer 2018, when I noticed a general slowing of my legs and walking speed to the point where older people would zoom past me. I didn’t think too much of it until when I was running, I kept on falling and cramping, and it felt like my legs were heavy, albeit without pain. Then, I kept on tripping on my flip-flops, particularly the right side, and as an avid swimmer and surfer, I began to take notice of these building subtleties. In the waves, I realized I could not get my feet underneath my hips fast enough and kept falling, so resorted to using a larger surfboard. So, I went to my first of a dozen neurologists, that I would eventually see.  Besides some subtle increases in reflexes in my legs, I was told my exam was completely normal. Then, the muscle twitches, cramping/spasms started to take hold, spreading from right to left lower and upper legs, and then plateauing and stagnantly brewing in the lower half of my body for around a year. I started seeing more neurologists, who ordered exams, with no striking abnormalities, except an issue with my peroneal motor nerve, that was thought to occur from crossing my legs (I don’t cross my legs). I started getting extremely concerned, and did some research, using both clinical signs and symptoms to date, to build my own “Dr House” mystery illness case; the search created a frequent flyer list that always started with three fearsome letters: A L S

Then my body slowly started shedding muscle and weight, systemically, with focal areas of muscle loss. By the end of 2019, I had had MRIs, lumbar tap, copious blood vials, a couple of unimpressive, non-thorough EMGs, and clinical exams, with a strong suspicion of psychiatric illness manifesting as physical symptoms. At first, I was upset, but then I started to briefly trust the doctors knew what they were doing, even though in the back of my head, I knew they were wrong. There was one caveat to this; a general neurologist’s clinical exam that returned results that had him send me to what was the first of several neuromuscular physicians, with a clinical note that revealed: R/O ALS. As the months went by, the symptoms reached my core section, and my athletic abilities were being stripped away from me, one by one, from mountain sports, to weightlifting, to swimming,  until one defining moment, that I knew this was serious.

Being a swimmer and surfer my entire life, I had built an impressive baseline of lung capacity and breath-holding capabilities. I was surfing in San Diego, when a large set of waves was breaking on the outer reefs. Normally, I would turtle roll, holding my board as the white water broke above me, and get tossed about like a washing machine. This time was different, with two key identifiers: First, I lost my grip, and my board got thrown into the abyss. And second, my Lungs. I needed to get to the surface, and fast. Normally, when you are swimming or getting tossed, you are keeping calm and slowly exhaling. Well, that exhale petered out very quickly, and I inspired seawater. Luckily, I fought to the surface, and some nearby surfer helped me to the beach. Coughing the rest of day, and incredibly exhausted, it hit me that my life was going to change.

The next few months were full of frustrating doctor appointments, and a few new eye-opening symptoms, like difficulties going up stairs and ramps, choking on food, and losing balance and falling. And odd laughing and crying episodes, that seemed disconnected or exaggerated to the moment.  (Completely normal for a 32-year-old athlete, right?) With still no answer, I went back to playing Dr House. I combed all my records and clinical notes. In the summer of 2021, I decided to create a matrix of my clinical signs and symptoms: hyperreflexia and spasticity of lower extremities, positive palmomental reflex, positive jaw reflex, pseudobulbar affect fasciculations, muscle atrophy in feet, lower motor neuron signs on EMG, pulmonary function decline. It was then that I realized, the culmination of events, and clinical picture only fit one disease: ALS. I knew I had it. However, I was alone in this diagnosis: doctors, friends, and family did not believe me, and I had to continue to fight for an answer. I was so convinced I had ALS, that I began to pursue a long-term disability plan, so I wouldn’t financially burden my family’s future. Denied: Reason: Concerns for motor neuron disease. 

The next three years were full of more appointments and more inconclusive results were revealed from the rushed exams, at some shockingly highly revered medical establishments. I wanted to give up, until a last-ditch effort closer to home in San Diego. Finally, an incredible experience: a two-hour appointment full of careful listening, thorough examination, and open and honest conversation, revealed a differential set of diagnoses with the highest concern for motor neuron disease. A few months and several tests later, that concern was brought to reality with a full-fledged ALS diagnosis on November 20, 2024. A mixed bag of emotions ensued, crying, anger, validation, relief. And I drank a couple strong margaritas that night. On one hand, this was a horrible answer, but it finally was an answer. 

Having already researched and knew a fair bit about ALS before the diagnosis, my family and I decided to focus our attention on networking with the ALS community. My father had known about Augie’s quest through work, so my mother reached out for an initial call/interview to see how we could get involved in this fight. The Augie’s Quest team have become fast friends, as we partner with them in various fundraising events to bring awareness and funnel crucial capital to clinical research and drug development that will eventually end ALS.

So, while I would not wish the last six years on anyone, it’s my journey, and it has connected me with some pretty incredible people. Uncurable is Unacceptable, and the fight continues for this brave community.  

Edward and I began dating in 1985. He was kind, charming, and truly swept me off my feet. We dated for five years before getting married, deeply in love and eager to plan our future together. As our relationship blossomed, we often spoke about our dreams and what life might hold for us. We promised each other that nothing would ever come between us, our playful banter always ending with an “I love you more”.

After we were married, Edward received a job opportunity in California. The idea of an adventure was thrilling, and we embraced the chance to start fresh on the West Coast. It was there that our family began to grow, welcoming three children who brought joy and laughter that filled our home. I always considered myself extremely lucky to have a husband who was present and heavily involved in raising our children. He embraced fatherhood with unmatched enthusiasm. On Christmas mornings, for example, his excitement was undeniable—he was always up before the children, eagerly standing at the bottom of the stairs with his video camera in hand, ready to capture every moment. Watching him in those moments made me fall even deeper in love with him.

As the years went by, our dreams transformed. Late-night conversations about careers gave way to discussions about school projects, sports, and the challenges of parenthood. Yet, our bond only deepened. Through the chaos of raising three children, we never lost sight of each other. We became more than parents—we became a team, supporting one another through everything life threw our way. Family vacations, school plays, and endless backyard barbecues filled our days with happiness. With each passing year, we celebrated not just our love but the family that had grown from it—a beautiful reminder that shared dreams can create a legacy that lasts a lifetime.

As the years passed and our children started their own families, our family grew even larger with marriages and grandchildren. Our roles as Mom and Dad evolved into Yiayia and Papou; unlocking a new chapter that we have valued greatly. We have felt truly blessed to have such a close and loving family.

In September 2024, our world was turned upside down by an unexpected diagnosis: Edward was diagnosed with ALS. The devastating news sent shockwaves through our family, and we knew the journey ahead would be the most challenging one we had ever faced. As always, we approached this as a team. Our children rallied around us, and together, we traversed the complexities of this new reality.

ALS has taught us just how precious life is and how important it is to cherish every moment we share. Though our lives look a little different these days, I know I am exactly where I am meant to be—by Edward’s side as we navigate this journey together. Oh, and Edward, I love you more. – Alexis

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.