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Colorado Gives Day – Brandon and Samantha Conley

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“I am Brandon Conley’s wife, Samantha, and Brandon has been living with ALS for over two years now. We live in Evergreen Colorado, and we used to enjoy all the Colorado sports, activities, and adventures that the mountains bring. Brandon was an avid skier, hiker, camper, and mountaineer. This disease has been the most devastating for someone that was so active and loved outdoor activities. And it has been excruciatingly hard as his wife to watch him lose all his favorite activities. We loved to do all these activities together, which now I just do by myself or not at all because I am a caregiver for Brandon. It’s been a series of losses over and over again. 

Brandon was diagnosed with ALS shortly after we got engaged two years ago. After we received the diagnosis and learned about the very rough and devastating road ahead for ALS patients and their caregivers, Brandon stated he didn’t want me to go through it and said we could call off the engagement. I refused (naturally) and instead, insisted we get married sooner than we had planned so that Brandon could fully enjoy our wedding together. I knew the day I accepted his engagement ring, was the day I made a commitment to be with him forever, no matter the circumstances. So we rushed the wedding, got married two months later, and have been married for one year now! We have learned so much this year about what marriage truly means when they say “through the good and bad” or “in sickness and health”. There have had countless losses and sacrifices over this last year, but we are a team and we love each other. And I know Brandon would do the same for me. 

Brandon is currently on an Extended Access Program (EAP) program for the clinical drug called “Clene”. We have found it to be very helpful with his energy and symptoms. And since it is an EAP program, he can still use holistic medicine and protocols which we have also found to be extremely helpful. Brandon has lost a great deal of mobility throughout his body, mostly his hands, and overall strength. Speech has worsened too. Brandon uses a wheelchair when we need to walk long distances. His ability to walk is slowly declining. But we continue to do our own research and try to live the healthiest lifestyles possible to help with recovery and slow down the progression. 

We both are still working full-time jobs, but it won’t be long before Brandon will have to resign and I will be his full-time caretaker if there are no better treatments available. Brandon already needs help throughout the day with things like getting dressed, getting ready, eating, opening things, and just daily tasks. Luckily, I work from home so I am able to help with his daily needs. We have started fundraising efforts to help with the astronomical cost of ALS, as it isn’t recognized by our healthcare system and is not covered by insurance. We are also starting the process of making our home disability friendly, including wheelchair accessibility, and all the financial stress that it also brings. Fundraising has been the only option to help us with these expenses. 

As a family, we are strong in faith and we have hope for a cure so that no other family has to experience what we are going through. We choose to focus on the positive strides in the ALS community. But we also choose to be activists to promote awareness and change in the healthcare system for neurodegenerative diseases. Brandon and I are currently developing our own non-profit organization to help other families with ALS and it should be official by this time next year (stay tuned!)  We will continue to fight this monster disease for the rest of our lives so that nobody ever has to hear, “you have ALS” ever again. 

Thank you for reading our story and please follow us on social media at @conleyba and @samkellyconley if you would like to continue to follow our story, or read our blog page at “Caring Bridge” for journal updates. You can find that here: https://www.caringbridge.org/visit/conleysfightals “

I am confident that one day we will end ALS

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Growing up, sports were an integral part of my life. I played baseball, basketball, soccer, football and was on the local swim team, too. When I graduated from high school in 2013, the next part of my journey was heading up to the University of Oregon (Go Ducks!) to study Sports Business. While at Oregon, I worked for the athletic department and football team and was also the Vice President of the University’s sports business club, so not to toot my own horn here, but I was doing everything I could to immerse myself in the community, gain experience, and ultimately set myself up for a successful career in sports upon graduation.

However, during Fall term of my senior year, I began to experience random muscle fatigue, muscle twitches, and cramps in my arms and legs. At first, I thought maybe I  just didn’t get enough sleep the night before or didn’t get proper nutrition and hydration for the day. But as days and weeks passed, it continued. Normal things like taking notes in class, walking to and from campus, and working out at the gym started to become progressively difficult. As it became obvious that something was off with my body, I made an appointment to see a physician about my symptoms. After that initial visit, I was quickly referred to see a neurologist and two weeks later was doing a series of medical tests to figure out what was going on. I scheduled a follow up appointment on October 25th, 2016. Within five minutes of walking in the doctor’s office, I was told by the neurologist that I have ALS, or better known as Lou Gehrig’s disease, and I have 2 to 5 years to live. And just like that, my entire life flashed before my eyes as I was told that besides a pill that could potentially extend my life by 6 months, there are no other effective treatments or cures to give myself a fighting chance, and to go home to prepare for the road ahead. To give some perspective, the legend Lou Gehrig was diagnosed with ALS 83 years ago, and yet, people who are being diagnosed with ALS today are still given the same prognosis of 2 to 5 years. I don’t know about you, but to me that is simply unacceptable.

The average age for an ALS diagnosis is 55. I was 21 years old when diagnosed, which goes to show that ALS can affect anyone at any time. It is a relentless disease that has deteriorated every voluntary muscle in my body, leaving me physically paralyzed, and unable to talk, eat, or breathe on my own. I actually wrote this on an iPad that I control with my eye movements, pretty cool shit to be honest. I’m blessed to have technology like this which gives me so much independence and the ability to communicate and interact with others. I’ve even developed a nice game of chess because I’m a competitive guy at heart, and I don’t let my physical limitations get in the way of that. (If anyone here plays chess and ever wants to get their ass kicked in a game online by a guy who plays with his eyes, just let me know.) 

Even though my diagnosis threw a major twelve six curveball on the plans I had in life, I haven’t let it stop me from pursuing my passions, creating lifelong memories with my family and friends, and advocating to make a difference in the fight against ALS, especially through the power of sport. As difficult as this disease is, the power of the ALS community is something that I’m continuously inspired by and I deeply value the relationships I’ve made with other people living with ALS and their families, because we fight for each other and in memory of those we’ve lost, like Dwight Clark, Pete Frates, Pat Quinn, Gretchen Piscotty, Kevin Heller, and so many others who were taken too soon. 

Because of science and cutting edge research, I am confident that one day we will end ALS. When that day comes, if I’m so blessed to be here to witness it, you can rest assured that I will be having tequila shots and champagne through my feeding tube in celebration, what a mixture. I’ve supported Augie’s Quest and the research at ALS TDI ever since I was diagnosed, and I have so much faith in the important and urgent work they do day in and day out to find treatments and cures for ALS. As many of you may know, ALS takes a village and I’m lucky to be surrounded by so much love and care that my family and caregivers provide me to ensure that I live a meaningful and high quality life. 

I’ll leave you with my favorite quote from one of my idols, Steve Gleason, “I believe that my future will be greater than my past.” Every day is a battle, but that quote is a mindset I strive to live by and it keeps me pushing forward every day. Thank you to each and every one of you for being here and being our teammates in the fight against ALS. You are truly making a difference and that gives me so much hope and motivation to keep going. God bless.

A Veterans View

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As we celebrate the 4th of July, the birth of America’s Independence, it brings to mind the endless journeys of Veterans who have supported our country with deep sacrifices.  These sacrifices have redefined what Independence means to America. 

It is amazing to think about the vision of our forefathers when they established the United States Military Academy 26 years after 1776.  USMA was established in 1802 and has produced countless military leaders, business executives and politicians. West Point’s curriculum demands academic excellence, demands physical and mental toughness, and develops future leaders.  More importantly West Point has produced thousands of men and women who following their service, live lives of great courage and character. 

After graduation from West Point, my education continued with Airborne school, Jumpmaster school, Ranger training and Basic Officers Courses and then, deployment.

I reported to the 82nd Airborne Division and received orders for Vietnam, 1968-1969. It is in this war that the Class of 1967 lost 30 classmates KIA, more than any class.  This was about 5% of our graduating class who gave the ultimate sacrifice in service to our country.  I keep a photograph of their names which are etched into a window at West Point.

How did all this experience impact my journey with ALS?

First, I still maintain the mental toughness from all my training and experiences.  I believe that there is no problem too difficult to figure out.  Next, I developed a support team who have assisted me in this journey and I continue to do extensive research.  I got involved to provide meaningful help where I could make a difference for other ALS patients.

I always try to keep a sense of humor.  Most importantly, I am fortunate to be surrounded by family and friends who have supported me completely.

I support Augie’s Quest because of their focus, their leadership, and the results they have accomplished.  I realize that everyone is searching for the “cure” but my discussions with their leadership team about focusing on ways to slow the progression illustrates their commitment to a broader approach for ALS patients.

Let’s continue the fight to find a cure.

Ed Beck

USMA Class of 1967

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.

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

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