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ALS: When fitness is all you know…

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In the Fall of 2019, I attended a cross-fit affiliate gathering in Whistler, Canada. During a workout I developed some problems with knee/shin/foot pain in my right leg, which lasted a couple of days. I realized that my right foot didn’t move as usual. A doctor at the gym suggested I see a neurologist to get it checked out…he suspected drop foot.  After a battery of tests, two spinal surgeries and an eight-day hospital stay, I had lost 20 pounds in weight, and my right leg had dramatically decreased in size and strength.  This was a far cry from my top lifting days where routinely squatted 300+ pounds and deadlifted over 400lbs!  I knew something was wrong.

After more tests with a new neurologist, we narrowed down the list to include ALS.  Then it was a waiting game to get a definite diagnosis, and everyone that knows me knows that I’m not a patient person, so it was quite stressful!  Even when you know it’s coming, the ALS diagnosis is still shocking, especially for those of us who were extremely active.  I’m determined to continue moving my body, working out seven days a week. 

I used to be a somewhat pudgy teenager who was more interested in cake in my early years. Then in May 1982 all that changed when a friend of mine opened a gym in my hometown back in Germany.  Working out then dominated my life in some shape or form over the next 40 years!  I joined the German Army, was stationed in Munich (in a motorized infantry battalion) and joined a gym that had a bunch of competitive bodybuilders as members. A few years later, I competed in my first shows, making it to the Finals in the German Nationals in 1990. 

While working as a trainer at Joe Weider’s Bodybuilding & Fitness Camp at Loyola University in Los Angeles, I met my wife Robin, and we settled in Cincinnati.   In 1998 I won the Overall titles in the Mr. Northern Kentucky and Mr. Cincinnati and competed in several National shows. Later, I opened my gym, called ‘Das Gym’, and eventually  became hooked on CrossFit while searching for ideas to run group classes, and became affiliated that year (at that point there were less than 100 Cross Fit gyms in the world, now it’s upwards of 15,000!). I was lucky enough to compete at the Cross Fit Games, and also in a number of regional and local competitions. 

Currently, I’m still working five days a week as a fitness assistant (I sold my gym April 2021), running classes and overseeing 2 gyms.  It’s not as much as I’m used to doing but as Augie says, “I redefine normal every day” and “celebrate what I can do instead of focusing on what I can’t”!

Sofia and Chris

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‘meet me at the belmont’ a sign and idiom that we’d love to say was born because of Chris and I—for it’s where we first met; at the Belmont, on La Cienega Blvd, in West Hollywood, California about 9 years ago…

I lived on Ozeta Terrace just up the hill from the Iconic ‘Sunset Strip’, Sunset Blvd in West Hollywood, on this sweet corner in a little studio track of buildings that overlooked the city, and had been there for years. It was an eclectic community of transplants from all walks of life, who came to Los Angeles to pursue dreams of being musicians, artists, actors and models.

While out and about with my neighbor, we found ourselves at the Belmont where Chris was there hangin’ with his friends… My neighbor introduced us, and we had some funny conversations; the first of which involved Chris grabbing my calf and asking me: “dancer or gymnast?” I surprisingly, and curiously answered: “Dancer”. Naturally, we spent the rest of the night bonding over stories highlighting our mutual respect for each other and the dedication and love we shared for both hockey and dance—that shaped so many years of our lives.

I knew Chris was full of character and life when I saw his forest green 90’s Honda, and we had to get in through the drivers side as the passenger door was stuck shut. And that Honda was a character of its own written into Chris’ colorful story, and adventures to and around LA (including the first place we drove to). Chris had learned to skate from his grandmother when he was a youngster, and immediately, fiercely skated across the ice. His love of skating evolved into playing hockey when a family friend of his, Bob Cielo introduced him to the game. He grew up traveling from rink to rink with his family, played in many prestigious hockey events, was drafted 125th overall by the Calgary Flames, went on to play for Notre Dame University on a full scholarship, and played professionally with various South, and East Coast Leagues.

For Chris, life branched in many directions before he rooted in Los Angeles for 17 years. He was discovered by Calvin Klein while telling a dramatic story during brunch in New York City. This happenstance encounter launched his global modeling career starting with his first campaign alongside Kate Moss. His modeling career and charismatic personality led him to acting and ultimately writing. Chris’ life was full of wild adventures that brought him all over the world. And our love of travel was also mutual and grew over the years while we both pursued our Arts in Los Angeles.

A fond memory we share was our first camping trip together for his birthday, early on in our relationship. It was April, and I went to REI and picked up some basic camping gear for him in hopes that he would love camping in nature as much as I did. We headed up Highway 395 (what would later become one of our favorite routes), and on to Yosemite. I had a backup campground booked as I chanced one of Wiwona’s walk-up sites being free. And it was! So we took out his new tent… and I busted the tent pole! It was an adventure back down to the only local camping store to find shelter in a new tent. We made it back before sundown with a Coleman and a tricky zipper to keep us humored. Despite the contrast, it was a perfect trip, and a true foreshadowing of our lives ahead in many ways; of us learning from the seasons, and seeking the silver linings amidst the obstacles in our wild adventures to come.

Our love of spending time outside in nature, often wilderness camping with our dog Lyla, grew over the years, as did our many stories. We moved around Los Angeles (West Hollywood, Topanga Canyon, and Hermosa Beach) living out our dreams as artists, actors, writer(s) with all of the challenges, lessons, and colors that came along with those passionate choices.

Mainly, the most life-altering thus far—the day Christopher was diagnosed with ALS. We were in shock on April 3rd of 2019, and our whole lives changed in an instant. Now Christopher navigates the full spectrum of ALS—physically, emotionally, mentally, and spiritually. And I am along for that soul-shaking ride; learning, expanding, loving, evermore.

Our silver lining throughout this journey, has been the community we have both met and have come to know deeper; some of the most heart-lead beauties we’ve ever been blessed to encounter. We are eternally grateful for these connections, and their interconnectedness with each other and the world. From this depth, Chris’ legacy continues with the incarnation of Halt ALS, his growing foundation aspiring to bring about more awareness of ALS and ultimately contribute to Halting it! ALS (as you may well know) has affected our lives in profound ways, of which amidst this rollercoaster, has led us to ultimately love deeper through it all. As one of our cherished authors, Kahlil Gibran so apropos wrote: “For love if it finds you worthy, directs your course…” 

A Love Story – Ed & Cindy Beck

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When our marriage vows said in sickness and in health, little did I realize the true blessing of what marriage is all about.

This love story begins in April 1978 when Cindy, from New Jersey and Ed, from New York, headed to the West Coast to work for IBM.  Cindy had recently graduated from college and I was recently discharged from the Army after Vietnam.  After dating for about 4 and 1/2 years we got married at the Cadet Chapel at West Point. Our honeymoon was fantastic as we traveled around Europe, and made two weeks of great memories.

We have two incredible children who have developed into wonderful adults, both married with children.

In October 2020, after a dentist appointment, I began slurring my speech.  Cindy dragged me to several neurologists until finally, in May 2021 at Mass General, I was diagnosed with ALS.  This is where Cindy, the love of my life, stepped up and told me how we were going to attack this disease.  She has been the driving force behind the entire program trying to keep me healthy and developing a “Team Ed” to support me during this journey.

Chris Beckette & Taylor Lew

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My fiancée, Taylor, is an incredible human being. She truly understands me in ways I never knew another person could.

We met in July of 2017 on Bumble.  Everything I found about Taylor made me want to impress her.

I received the diagnosis of ALS in August of 2018. We realized I still had a lot of living to do, and we found every reason to travel together.  We went hiking in Zion, Yosemite and the Grand Canyon, and took overseas trips to the Philippines, Costa Ria and Mexico We understood that time was not necessarily on our side until traveling together would become a lot more challenging.

Taylor is my primary caregiver and not enough credit is given to loved ones that take on the role of caregiver.  I’m still here and I have a lot of living to do. I am extremely fortunate to have a partner like Taylor in my life.

Ashton and Shaun

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My dad is the best dad ever and I think I could never ask for a better one.

Ever since my dad was diagnosed in September of 2017 my life would be changed forever. My dad was getting weaker near his legs when it first started, so I had to help him get up the stairs and help him walk around. He then got a wheelchair and was able to move around. I used to make breakfast for him when we lived in our other house, and we made so many memories there, too. I love the fact that my dad is such a fighter from ALS, and I help my dad so much. Even when my dad couldn’t do all the things that I could do, we still can make lots of good memories. I love it when I get to go places with my dad, and spend lots of holidays with my dad, too. I am so lucky to have such a good, fighting dad with me and the fact he fights for his life to be with me and to spend time with me is the best thing anyone can have from a dad.

 

SET A GOAL AND GET READY TO MOVE IN MAY FOR ALS!

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As a marketer, I love goals and a good campaign; especially one for such an important Quest. So, I was honored to share why I feel it’s important to continue moving your body after diagnosis to inspire participation in Augie’s Quest “Move In May For ALS” as part of ALS awareness next month.

A little over a year ago, I was perfectly healthy and in great physical shape…until I noticed progressive weakness in my right leg during my runs. Three months later, I was diagnosed with sporadic, limb onset, mostly upper motor neuron ALS.

As a lifetime athlete…prior to diagnosis, movement and exercise always made me feel happy, healthy and in good spirits!  I was a pre-elite gymnast in my youth, NCAA collegiate springboard diver, and as an adult among other things an avid snowboarder, surfer girl and endurance athlete – having run the Chicago Marathon competitively for 21 straight years since 2000. I ran my last Chicago Marathon virtually during the pandemic in 2020.

So, regardless of the surreal, shocking and sudden life changing news l received last April, right from the start I knew my ALS journey was going to include modified forms of exercise for as long as possible. Because my body always responded well to movement. Despite all of the chatter and debate about exactly how much exercise is advised for ALS patients, I knew that no one’s ALS journey or baseline is the same. So, why should exercise and movement recommendation be so generic?  I decided it was really important to continue to listen to my body moving forward and apply my athletic discipline and training experience to develop a new wellness plan to stay strong both mentally and physically.

I quickly put together an A-Team of amazing of friends, doctors, physical therapists, a flexologist, and massage therapist. I also expanded my prayer circle as well. Even though some days it is a huge victory just to get out of bed in the morning, I go to Stretch Lab twice a week, physical therapy, occupational therapy, massage, mani pedis and weekly visits to the Drybar as a treat. All of these activates keep me motivated and moving. On the weekends, I really love to train on my Catrike (recumbent bike) with friends.

Post diagnosis, just like in good health, continuing to have goals is so important to stay in a positive mindset and to have some fun when things get tough. It also helps me focus on what I can still do instead of dwelling on all of the things this disease has taken from me. Last October, the Chicago Marathon race director worked with me to complete most of the 2021 race virtually on a push rim bike. Then, I was able to complete a 5k on race day with my walker to earn my medal and keep my 22 year marathon legacy runner tradition alive. I also just did my first Catrike 10k in March which was a blast! Believe me, the sense of accomplishment from these two events is right up there with qualifying for NCAA Nationals or the Boston Marathon.

At this point, I feel so Blessed to still have the ability to balance my wellness plan while continuing to run my Newport Beach based Marketing & PR Firm, California Marketing Concepts. I love working with all of my longtime, supportive clients – just like I love riding my Catrike on the boardwalk in Newport watching the sunset. I feel more like myself when I’m working and when I’m active. It gives me a much needed sense of accomplishment and puts me in a calm, meditative state like I used to feel during my long runs.

Some days are harder than others, and I realize I’m still relatively early in my ALS journey. But I’m trying every day to stay strong through movement. It’s never easy…ALS is the marathon challenge of my life. But, now more than ever it’s worth it to dig deep, still have Hope, positive goals and keep moving.

So, if you too need a positive goal to get moving – sign up today to participate in Augie’s Quest “Move In May For ALS”.  As part of the campaign I’ll be doing the Prince Of Whales Marathon in Alaska on May 28th on my Catrike with my amazing new friend, Andrea Peet. Her story inspired me the night I was diagnosed last April when I needed to be brave. I can’t wait…!

Find Your People

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Find Your People

Walking out of the neurologist’s office on a mild March day, I did not fully comprehend the details of what I had just been told but the gravity of the situation was clear. In a moment like this, it feels like everything around you should have changed. Of course, nothing has. The sun is still shining. The same goes for a few hours later, when I found myself on my bedroom floor googling: ALS, Motor Neuron Disease, Stephen Hawking…the future that I had imagined for myself, that I had taken for granted, evaporated. Yet, of course, my apartment still looked the same. Learning that some aspect of your life is suddenly, fundamentally different from that of those around you is isolating. With ALS, this feeling is exponential.

For a while, I chose to navigate this disease on my own. This is not to say that I didn’t consult specialists, my family and friends being supportive through everything, but I didn’t venture into the ALS community because I wasn’t ready to see what lay ahead. The few searches that I did do predominantly portrayed older men with the disease. I found articles on trying to explain such a diagnosis to your children or your grandchildren, on dealing with the grief of having to retire a few years early — incredibly difficult obstacles but ones that did not apply to me. Yes, these articles referred to a diagnosis identical to my own but I couldn’t really relate. I was twenty-six and still a student. I loved my boyfriend but was in no rush to get married and start a family; my career was just beginning. For me, it was easiest to focus on my life and everything that I could still do. I remained relatively ignorant of what this disease might mean for me later on, but the divide between myself and others continued to widen anytime certain topics came up. My feelings of isolation grew stronger.

In time, I became more accepting of my diagnosis. I realized that as much as friends and family were eager to help, they would never be able to fully understand the trauma of receiving a terminal diagnosis, of having your future look so grim. I needed to find other women that I could really relate to. ALS isn’t actually that rare, and the stereotype that it is an old white man’s disease is certainly incorrect — there had to be someone else out there who looked like me and was also facing this beast. Someone who understood the struggle of not being able to fit foot braces into heels, of trying to do your hair and makeup when you can no longer hold up your arms, of dealing with your period when your hands are no longer strong enough to manipulate a tampon, of realizing that your body isn’t strong enough to be pregnant…

Thanks to a social worker at Columbia Medical and the support of I AM ALS, I slowly became connected with other young women facing this disease. There was something uniquely comforting in finding these women, and I no longer felt so alone.

For years, my favorite quotation has been from Audrey Hepburn, “The best thing to hold onto in life is each other.” Human connection is the essence of life. We need others to make our days easier, more fulfilling and happier. Some of us may have friends and family who we have been close with for decades, but at different phases in life, we need new connections, too. People who understand a new passion or unexpected challenge, and who reflect the different facets of our identity. These connections can only make life better. Finding your people can only make life better.

In the spring of 2021, I founded Her ALS Story to help minimize feelings of isolation for myself and others with a similar prognosis; to find my people. Today, Her ALS Story regroups over 40 women diagnosed under 35 to both build a network for us to lean into and build a platform to use our energy to raise awareness and help accelerate the path towards better, more accessible treatment options. These women exemplify what it is like to continue living despite ALS. They have answers and solutions to obstacles that arise, (pALS, seriously, check out https://heralsstory.org/hacks for recommendations from HAS members which can make your life easier). These women inspire me everyday. They are badass! I wish that I had found them sooner but I am so grateful to have them today. I am proud of what we have built and believe that we can, and are, making this difficult journey a little bit easier for each other.

Tyler Decker as a kid on a surfboard

The Moment Our World Stopped: Guest Author Tyler Decker

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When Tyler Decker is on his surfboard, nothing can get in his way. Surfing is more than a hobby for Tyler, it’s a lifestyle. And the feeling that Tyler has while gliding across the waves – indescribable.

Born and raised in Southern California, Tyler first stood up a surfboard when he was just three years old.  After that first experience when he felt the waves beneath his feet, he never stopped. For Tyler, the ocean is home.

But that all changed in June 2020 when Tyler started to notice his muscles twitching in his upper arms and felt weakness throughout his body. Tyler’s symptoms started to affect his ability to surf, so he went to a general practitioner to seek some answers to his dwindling strength. 

“We knew something was wrong when he could not get up on his surfboard,” said Tyler’s dad, Albert.

Several inconclusive tests resulted in a few more magnetic resonance imaging (MRI) scans. When the results came back from Tyler’s muscle testing, the doctor realized this case was out of scope, and referred Tyler to a neurologist.

The Decker Family endured a month of uncertainty and speculation before Tyler could undergo further testing. As the list of possible conditions started to narrow, they never considered that Tyler’s diagnosis would be the worst case scenario. 

On July 15, 2020 when Tyler’s neurologist ran an electromyogram (EMG test), it confirmed the Decker Family’s greatest fear.

“At that moment, our world stopped.”

Follow Tyler on his journey to #WipeOutALS on Instagram @tylers.tribe

At the young age of 26, Tyler was diagnosed with amyotrophic lateral sclerosis, also known as ALS.

The initial symptoms of ALS can vary from person to person. For many, the onset of the disease is so subtle that the symptoms are often overlooked. However, as symptoms begin to develop into more obvious muscle weaknesses and/or atrophy, physicians are more likely to suspect ALS in their patients. 

Although ALS can strike at any age, symptoms most commonly develop between the ages of 55 and 75, making Tyler’s diagnosis that much more rare, and that much more devastating. While Tyler can no longer surf, he spends almost every day at the beach, longing for the day he can jump back on his surfboard. The ocean is still his home.

From the very start, our mission was clear and simple: to find a cure for ALS. When Augie Nieto founded Augie’s Quest, he knew it was essential to fund research that would help people currently living with the disease. As Augie likes to say, “If your house is on fire, do you ask the firefighters to find the cause – or put it out first?”

As we continue to fund and support the most innovative science, we need you to help fuel our efforts. Because ALS is curable; it’s  just underfunded. Join us, and let’s #WipeOutALS. 

Support our Quest to find a cure by making a donation today.

Jimmer competition in an iron man triathlon

Keep Grinding: Guest Author Jimmer Szatkowski

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When Jimmer Szatkowski isn’t operating two new, wildly popular Chick-fil-A franchises in Upstate New York, he’s donating his time, giving back to the community, and consistently running around making things happen, literally.

That’s why after completing one of his usual half-marathons in late 2020, after months of doggedly working to get his first restaurant and the construction of a second restaurant through the COVID-19 pandemic, Jimmer started to feel unusually tired.

“I finished a run and it felt super hard. My legs were beat.”

But that didn’t stop him. He brushed off the fatigue and continued to keep his busy daily cadence of running his Chick-fil-A operations, participating in local fundraising events, and being a devoted husband and father to three children. At this point in his life, Szatkowski had earned a sweet second wind in his professional career and personal life. After a successful career as an IBM executive, Jimmer earned a coveted opportunity to join the highly successful restaurant dynasty and move his family back to their original home state of New York. Life down the homestretch was looking very promising for the Szatkowski family.

Tragically, ALS had other plans for Jimmer Szatkowski who was basking in the prime of his life.

He sailed through his annual January physical with a clean bill of health, but the weight of the onset symptoms was creeping in as the opening date of his second restaurant loomed closer.

“I went on a couple of business trips in January and February and walking across these big airports was exhausting.”

As Szatkowski’s usual abundant energy and his ability to maintain his physically demanding, 13-hour workday continued to decline, Jimmer and Betty, his vivacious, dedicated partner of 23 years, decided to seek some answers to Jimmer’s shocking dwindling strength and endurance.

“Having to think about walking is incredibly humbling, painful, and heavy – especially going from running a marathon to taking a five-minute walk and having to sit down.”

After some preliminary tests, they received heavy news from a local neurologist that indicated Szatkowski might have ALS. However, Jimmer was going to have to wait to see another ALS team of specialists to confirm the looming diagnosis. As Jimmer’s symptoms persisted and the grand opening of his second restaurant was just weeks away with much to be done, Jimmer and Betty sat silently with the dreaded possibilities.

“There was a lot of terrible processing going on. That first month was terrible.”

The Szatkowskis quietly endured a month of uncertainty and speculation before Jimmer could undergo a grueling battery of further testing. Then, a renowned specialist with Duke University confirmed his ALS diagnosis on April 19. Jimmer and Betty were both rocked by the confirmation.

“Honestly, I had a full-blown mental health crisis.”

Szatkowski, the former IBM executive, is used to extreme pressure. He’s a typical, gritty, type-A personality who bushwhacked his way through a very difficult and traumatic childhood, the intense rigors of a competitive MBA program, the constant demands of a corporate career, and the consistent, daily maintenance of his ongoing sobriety. He has always been an achiever with an immense amount of faith despite many of his life challenges. However, the thought of having to deliver the news to the Szatkowski children, his community, and his Chick-fil-A family was overwhelming.

“We had the really, really difficult, challenging task of communicating this to our kids first, which there really isn’t an adjective in the English dictionary that appropriately captures how awful that is.”

As a man of faith, Jimmer had to reflect heavily on the new course his life had taken, a path he did not fully understand after overcoming so many other obstacles. This ALS sentence didn’t seem fair. With his second Chick-fil-A location opening within days of his diagnosis, and his middle child about to graduate from high school, his world was shaken. As this tragic news is still fresh and raw for the Szatkowski family, Jimmer constantly worries about what this sudden diagnosis means for his children and his future with them.

“This morning, I saw my 12-year-old son in his bedroom and I thought I might not see him graduate. Yeah….that’s a tough deal.”

Jimmer also faced his biggest spiritual negotiations and divine conversations in those early days post-diagnosis.

“I have a deep faith in God. I have been angry with God. I have questioned God’s will. Although I have never been weaker physically, I have never been stronger spiritually.”

However, Jimmer still struggles between making peace with his diagnosis and his uncertain future. As a husband, father, and business owner, he is responsible for not just his immediate family, but his employees, his relationship with his company partners, and his unwavering connection with his faith. His need to be strong as his physical body is betraying him is a cruel symptom of many ALS patients.

“I have moments every day where I’m sobbing in my hands because the weight of this is too heavy.”

While Jimmer is not alone in processing this news, those close to him are also measuring the impact of the diagnosis and what this means for the future. For Betty, the quintessential capable momager and steady working partner in all facets of the family business, she has had her own reckoning with the news and how this will indefinitely alter the face of their future as a couple and a family.

“This wasn’t in anyone’s plan.”

Jimmer thinks about what gets him through each day as a recently diagnosed ALS survivor. For him, having hope and purpose is key to living with the disease. His daily regimen is almost as busy as it was prior to his diagnosis, albeit a bit slower now and with much more purpose and more physical therapy.

“I have to be really, really smart about how I utilize my energy. I can’t do what I used to do.”

Szatkowski still rises at the crack of dawn; however, his early morning prayers, meditation, and yoga practice are much more mindful and spiritually deeper these days. Not only does he think about his own battle with ALS, but the thousands of others like him. He can no longer slam out a twelve-hour day on his feet or run a marathon. Jimmer is running an entirely different race to find a treatment that will stop his ALS in its tracks.

“Those days are over for now.”

However, in true Szatkowski-like fashion, and with his unwavering faith and steadfast support of Betty and his family, Jimmer does what Jimmer does best each day — keep grinding. With his faith, the support of his family, and an incredible group of friends and doctors, Jimmer and Betty are opening up about his ALS fight so they could help others.

Jimmer and Betty Szatkowski with their three children. 

As Jimmer recently went public with his diagnosis, he and Betty found their new calling that supports many of the charitable things the Szatkowski family has been doing anyway — community service and fundraising. Now that ALS is in their sights, the disease has gained another formidable enemy as Jimmer amasses his ALS army.

“It is my intention to fight this and help a lot of people along the way…this has forced me to be a better person…impacting the lives of others is a blessing and a gift.”

One of Szatkowski’s many strengths is making connections, building relationships, and creating successful networks. That, and his robust faith are the personal attributes that helped Jimmer make his way through Chick-fil-A’s notoriously competitive franchisee screening process. Betty recognizes how his big personality, work ethic, and tireless community involvement are going to raise more awareness and infuse fresh ALS fundraising efforts.

“We know there’s a platform here we can really use.”

The Szatkowski family makes a fierce team in the fight against the disease. In just the two short months since Jimmer’s diagnosis, they have already made some vital connections, built a network of prayer and support warriors, and have announced their intentions to raise much-needed funds towards ALS research. They have rapidly caught up with the status of ALS research and development and know that at some point there will be a cure, but also know that ALS research is still significantly underfunded.

For the Szatkowskis, that just doesn’t cut it.

While fighting the disease, they plan to launch their own attack. They know that relentless fundraising is the key to help speed up the research process as ALS patients struggle with the realities of how fast this disease can progress. For Jimmer and Betty, they’ve pivoted all of their fundraising efforts to solely concentrate on a cure for ALS. The Szatkowskis know that it can take just one successful clinical trial to forever change the course of people living with ALS, but money for research is not the only obstacle.

“I have no idea what’s going to happen in six years from now. One of these clinical trials could pop and it’s a game-changer.”

Jimmer and the entire Szatkowski family ask that people imagine what it’s like for their everyday lives to be suddenly interrupted with an unexpected and immediate disability like ALS. Betty recalls how before Jimmer’s ALS diagnosis she used to think about how every day is a gift, as we all do, but now that means so much more as she watches Jimmer struggle with everyday tasks. She and other ALS caregivers have a front-row seat to the anguish of watching their loved one’s strengths and abilities succumb to the disease.

“That whole idea of ‘live for today because we don’t know about tomorrow’…intellectually I knew that, but getting this diagnosis, you really feel it now…I don’t think I’ve ever had to say it with my heart.”

Jimmer and Betty are dedicated to living each day they have together with purpose. In their new mission to help find new treatments for ALS, they are seeking every day people like themselves to stop for just a moment and think about what a diagnosis like ALS would do to them and their family. They ask that we join their fight to help Jimmer and thousands like him beat this life-altering disease. Money and time are what ALS warriors like the Szatkowski need, and they’re asking for just one minute out of our day to donate to Jimmer’s new one-man marathon. He’s optimistic about his chances, but he knows the finish line towards successful treatment is in the distance.

“There is so much more I want to see and I intend to see it, but I’m not naïve about the nature of this disease. It’s a race against time.”

Jimmer and the Szatkowski family are now on a new mission: to beat ALS. Szatkowski likes to think he was personally chosen to go after this disease and win. Your generous donation to Augie’s Quest to Cure ALS will spread hope for Jimmer and countless others living with ALS, their families, caregivers, and friends. With every gift, you help fast-track effective treatments and an ultimate cure for this devastating disease.

Chris Clawson with Augie and Lynne

Augie’s Quest Guest Author: Chris Clawson

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I remember the first time I met Augie Nieto in the summer of 1991 at a trade show in Chicago. I walked away from that encounter thinking to myself — “what a dynamo!” His confidence showed in his stride, his powerful handshake and his outgoing demeanor. But most of all, I remember how his gaze was so intense you felt he could look right through you.

Fast forward a few years and I came to Life Fitness for what would be the first of three separate careers with the company, but it was while at another company that I got a call from Lynne and Augie together. The tone clearly had changed, something wasn’t quite right. To begin with, I never spoke on the phone with both of them at the same time beyond Lynne yelling hello into the phone and surely never heard Augie so subdued.

As they began to walk me through an abbreviated version of how Augie was experiencing muscle weakness, traveled all over the country to meet with specialists and the constant hope for answers that never came, I found myself beginning to worry where this was all headed. ALS wasn’t what I’d expected them to announce, but I knew exactly what those three letters spelled. It was beyond my ability to completely assimilate on the entirety of the situation on that call.

When people ask me to describe Augie, I respond — “which one?” I spent years admiring the first version of the man that I call my mentor; the person I describe as being known in the fitness community by a single name – AUGIE! That version was bigger than life, filled with bravado and even an arrogance to those that weren’t close enough to him to see how generous he was. He was as much of a celebrity in the fitness industry, as anyone had ever been. In a word he was bold.

The second version is far different than the original, as he has channeled all his passion and exceptional drive into a singular goal to find a cure for ALS. This “new and improved” Augie has operated as a hero for an underfunded and under-researched disease that has historically carried a death sentence with it. This version of Augie created Augie’s Quest, an inspiring charity that has raised hundreds of millions of dollars to fund ALS research with successful results, providing a beacon of hope for those living with ALS and their loved ones.

Augie is the reason why I and hundreds of others volunteer our time, fundraise, spread the word about the success of their drug development and pray every day for better times ahead for those being challenged by this insidious disease.

They may call it Lou Gehrig disease, but someday it will be known as Augie’s cure!

May is ALS Awareness Month. In May alone, 496 people will be diagnosed with ALS and will be challenged to choose how they spend their remaining years. Every day, Augie chooses to celebrate and focus on what he can do rather than what he can’t. He has shifted from finding fitness solutions to improve lives, to finding a cure to save lives – and he’s still keeping busy – working to achieve that goal.

Augie’s Quest to Cure ALS is dedicated to changing the experience of people living with ALS. With Augie’s Quest, ALS doesn’t stand a fighting chance. Support our Quest to find a cure by making a donation.

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

Augie’s Quest to Cure ALS
PO Box #9886
Denver, CO 80209

T: 949-506-1007
E: AQ@augiesquest.org

Copyright © 2022 Augie's Quest. All Rights Reserved.