I am extremely fortunate to have had a career as a songwriter for more than 25 years now. Music has always been a huge part of my life, and I know how blessed I am; doing what I love every single day.

Not everyone can say that they’ve written a hit country music single, or heard their songs performed on the Grand Ole Opry and Country Music Television. It really is pretty fun to stand in a crowd at a concert, and hear the audience sing along to a song that you wrote. I’ve even won an award or two for my work.

I have made my living working alongside some of the very best in the music business – numerous ‘Songwriters of the Year,’ world-class musicians, and Grammy-nominated engineers and producers. I even met my wife recording a song I wrote (that’s its own story).

But a lot of that changed when I was diagnosed with ALS in April of 2017. It was a pretty terrifying time, and I knew the road ahead for me and my family was not going to be easy. Beyond the many other symptoms, the prospect of losing my voice became more and more real as each day went by; I had an increasingly difficult time swallowing and developed a persistent cough.

As I realized that my wife, my two sons, and my friends may never really hear my voice again, I decided to do something I never thought I would have – I put on my “singer” hat and made my own record.

I couldn’t think of anything better to give them than the music I wrote and sang myself – me, finally singing my own songs after so many years. With the incredible support of some old pals from the music industry, and the generosity of many close friends, I began writing and recording. For the first time, I felt I had put my own ‘voice’ into the music and lyrics – literally and figuratively. The album, While You Wait, became a series of positive messages that I hoped would inspire others, and a few songs I wrote about or for my wife and sons.

It’s funny, really – I guess I only found my voice once I started to lose it.

The process really taught me to better appreciate my wife, my sons, my family, my friends, and life in general. I wish I had gotten that wake-up call some other way, but if it took getting ALS to wake me up, so be it.

I want to help spread awareness about this disease, and why it’s so important for us to work to find a cure. I have decided instead of being angry and bitter about my diagnosis, I am going to take this opportunity to remind my friends and family how fleeting life is, and how important it is to appreciate every second. ALS has taught me to try my best, and to not take a single second for granted. Some days it’s easier said than done, but I’m trying.

At our album release party last year, my co-writers joined me on stage to help support me and sing the songs off the record. In all honesty, I needed their help; by then, ALS had essentially taken my singing voice. I had recorded the songs just in time.

Ashley Gorley, Neil Thrasher, Bonnie Baker, Jason Blaine, Joanna Janet, Big & Rich, James Otto – some of the best in the music business were right there by my side performing the songs I wrote. It was one of the best nights of my life.

I hope these songs inspire people for many years to come – to live in the moment, enjoy being with loved ones, and to always make time for what makes you happy. To quote one of the songs on the album – “To take a little time… rewind… and simplify.”

To Listen to Bryan’s album, “While You Wait”, click Here.

 To Follow Bryan on Instagram, click Here.

Check out our March 2019 edition of ‘Science Corner’, with Fernando Vieira, M.D. – the Chief Scientific Officer at ALS Therapy Development Institute. Stay tuned every month for exciting updates on ALS research!

I’m often asked, “What are you most excited about with today’s ALS science? What could be the next breakthrough?”

It’s a tough question to answer, partially because ALS is itself such a complex disease. But one thing that excites and inspires me is how we are partnering with people with ALS to learn how to better combat ALS. And in turn, our scientists are now able to share back valuable, personalized insights with patients about their experience with the disease.

This idea is the cornerstone of our Precision Medicine Program (PMP), of which we’ve now enrolled more than 500 individuals with ALS, and counting. Through the PMP, people with ALS monitor their disease progression in real-time via cutting-edge technologies that detect changes in their disease, particularly their movement and speech, two areas greatly affected by ALS. This individualized information helps people make more informed decisions and better manage their ALS, their progression and response to any interventions. No other research entity actively engages people with ALS in this way, it’s a multifaceted program that is empowering people with ALS.

In an exciting science collaboration with Google, we’re combing through the large datasets collected within the PMP- medical histories, genetics, demographics, voice recordings, and activity trackers.  We’re learning ways to trace and define a person’s unique experience with ALS. We believe these approaches can reveal ways to streamline the clinical trial process, making it more agile and less expensive.

One advancement coming out of the PMP that we’re currently exploring in our lab is — utilizing human neural cells “in a dish” to model cellular weakening and death (a prominent characteristic in ALS) to identify potential medicines that could improve the neuron’s energy production and survival.

PMP is an innovative, first-of-its kind model working to drastically speed up the drug validation process for ALS. And, with these crucial data, our scientists are rethinking how we target and treat ALS, uncovering new ideas, likely treatments and pathways to an ultimate cure.

We are committed to growing PMP, enrolling at least 1,000 people with ALS in the program. An ALS breakthrough could come from this robust program, and be one of many important outcomes from our partnership alongside so many living with ALS today.

I hope you’ll encourage the people you love with ALS to reach out and get connected to this program. Please help us spread the word!

Thank you for your generous and continued support of Augie’s Quest – your giving is making our science, the growth and impact of PMP become a reality. You’re helping us get one step closer to realizing the ALS breakthroughs that will change the experience of so many with this devastating disease.

To learn more about the Precision Medicine Program, please visit www.als.net/precision-medicine

There is a solution for every symptom, we must find a cure for the disease; in honor of Brian Rainwater and his courageous fight with ALS.

“There might not be a cure for the disease, but there is a solution for every symptom”, this was the response my Father always gave when faced with another progressive stage of ALS.

In the spring of 2008 my Father, at the young age of 49 years old was diagnosed with ALS – AKA, Lou Gehrig’s disease.

All my life I’d known my Father to be an energetic, engineer problem solver waking up every day with the sparkle of life in his eye. His solution to a common cold was always eat an orange, drink a cup of coffee, take two aspirin and go to work; his pace in life was focused and tenacious. I knew growing up that he always saw life through the lens of solutions- there was always a fix, never a problem that couldn’t be solved.

In 2008 when he was told he had ALS, you can imagine that his response to the way he saw the world quickly translated over to the way he saw his diagnosis.

ALS completely dismantles and destroys the mind’s ability to control the muscular system: and, in my experience, getting to know people that have been diagnosed with ALS is that the people that end up with this nasty disease are some of the most tenacious individuals I’ve ever met my life. This was no exception for my Father.

What I noticed most about the six plus years that my Dad lived with ALS was that he was completely untouched emotionally and spiritually by the nature of his physical condition. When it came to the need to modify his work so that he could continue providing for his family there was no question, he made a request for the equipment that he needed explaining the modifications necessary to now do his job with an eye gaze. Or the time he petitioned the local public transit to be able to have a wheelchair ramp in his vanpool so that he could continue his carpool commute instead of interrupting his routine to work. Never a question of submitting to being sick, instead, he always focused on finding the solution to his symptoms.

In the end his body naturally surrendered to the progression of ALS- he died on Father’s Day, 2014 after a joy-filled discussion about dogs and life decisions, the last thing I said to my dad was, “I love you, see you soon”.

I believe that everything happens for a reason, and the fact that the industry I have made my career home champions finding a cure for the very disease my Father died of, well, to me that is fate.

I cannot think of a more powerful group of solution-oriented people to take on this ambitious cause, than us.

Thank you, Augie Nieto, for your spirit and being a fighter, just like my Father did, you see the possibility of living with ALS and continuing the fight to provide hope for many. In our battle to find a cure for ALS, let’s take a page out of my Dad’s book and remember that there is always a solution if we choose to see life that way.

Augie’s Quest is working tirelessly to find a way to live with ALS, there is a solution and with the continued focus and funding I believe one day people will be able to take this disease head on and live with ALS. Thank you for helping us keep up the good fight, and thank you Daddy, for inspiring me to see the world in this way, the legacy of your perspective will live on in me for all my days.

Lindsey Rainwater is an experienced business advisor, executive coach and the founder of The Women in Fitness Association (WIFA). 

WIFA is the global fitness association supporting women in their career trajectory helping them rise to their fullest potential in business and life. 

She is known for her work advising businesses on their internal processes and systems, her original published content, additionally supporting individuals in transformational change and leadership development.

Lindsey is a widely published author, has been featured in many podcasts, books, facilitated keynote talks and workshops. In 2017, IHRSA (International Health, Racquet and Sportsclub Association) recognized her as a “Rising Star”. 

Her intention is to help individuals and organizations enjoy necessary change in order to succeed.

We’re excited to bring you our first edition of ‘Science Corner’, with Fernando Vieira, M.D. – the Chief Scientific Officer at ALS Therapy Development Institute. Stay tuned every month for exciting updates on ALS research!

By now, you’ve all heard about progress with AT-1501 – one of the most promising ALS treatments in development today that could slow down disease progression. This potential breakthrough also provides us an innovative model, a new roadmap to replicate and improve upon for future developments.

Because most ALS patients only live between 2-5 years after the disease’s onset, we are driven to uncover ways to provide people with ALS the gift of more time. That motivation influences our scientific strategy and our aggressive approach to discovery.

You may wonder ‘what else is the research team working on and excited about?’ Or even, ‘how does ALS TDI go about developing possible ALS treatments?’

The short answer: we test a lot of drugs. We have the most robust pipeline of potential ALS treatments in the world. And more than any other time, we now have the best shot at success. We are working day in and out to bring the next promising ALS treatments successfully through to clinical trials as quickly as possible.

One big reason we’re in this position today – is thanks to Augie and Lynne Nieto’s leadership, a couple you know and love who are a rare force, using their business savvy and unlimited passion, to drive our collective vision forward to end ALS. With Augie serving as our Chairman and Lynne a leader on our Board of Directors, we’re certain one day we’ll go from saying “Lou Gehrig’s disease” to “Augie’s Cure.”

Fact is, there will never be a single, magic silver bullet to treat and cure ALS. We know ALS is very complex, and each person’s ALS is unique, progressing and presenting differently. We will need multiple treatment options to support the ALS community and give every ALS patient a fighting chance against this disease. What’s more, it is likely our findings and treatment discoveries for ALS may also help fight other neurodegenerative diseases in the future.

In the coming months, I look forward to sharing more with you about our innovative precision medicine program, how we’re supporting people with ALS with real-time information to guide their personal ALS journey, and much more.

Because ALS is not incurable. It is only underfunded. This is a disease we can tackle, this is a problem we can solve.

That’s why your generous giving to Augie’s Quest is so critical. And it’s why we need you now more than ever. Together, ALS ultimately doesn’t stand a chance against us.

~ Fernando Vieira

Chief Scientific Officer, ALS Therapy Development Institute

Fernando G. Vieira, M.D. joined the ALS Therapy Development Institute in 2001. He is a research director focused on preclinical discovery and development of therapeutics for people with ALS. He works at the Institute because he believes it is the place where he can best work with others to help shape a world where an ALS diagnosis is no longer crippling. Fernando earned a bachelor’s degree in biological engineering from the University of Florida College of Engineering studied medicine at Harvard Medical School. He has dedicated his professional life to ending ALS. He has dedicated his personal life to being the best father he can be.

Valentine’s Day has become a special day for Augie’s Quest. We see it as a time to share several stories of love – love in spite of, and even because of ALS. Last year, we dubbed it “ALS: A Love Story” and asked many of our ALS Champions if they would share their adventures in love and ALS with us. And share they did, offering up beautiful, honest, personal experiences and musings on their relationships that endure, are challenged and thrive, through ALS.

I was so inspired and moved by each, and find myself revisiting them when I need a “pick me up” on a particularly tough day for Augie and me with ALS. I hope they do the same for you. Each story reminds me to pause, be as present as I can in this moment (however good or bad it may be), and consciously appreciate our loved ones a little more. But most important, I try and not sweat — but savor — the small stuff. 

Now, nearly 14 years into this disease and with Augie’s 61^st birthday just around the corner, Augie and my “ALS love story” is all about finding and experiencing joy in the everyday; the small stuff. Getting big bear hugs from any of our eight grandbabies, quietly doing my needlepoint as I patiently wait for Augie to type out a silly message on his screen with his one big toe, taking our dog Rubye for a walk, marveling at Augie’s determination and ability to exercise as much as he can even when his body doesn’t cooperate, spending as much time as we can with our family and friends…these are the moments we savor together.

We’ve come so far in this diagnosis, accepting and living our “new normal.” Of course, it’s hard not to reflect back and remember how things used to be, before our life with ALS. When back then, those “small things” seemed to either get easily lost in our daily lives or blown out of proportion. ALS has certainly shifted our perspective. A rude and cruel awakening, but there’s so much more we cherish now.

There’s real joy in looking at the life we’ve built together despite ALS. I know Augie and I are extremely fortunate in this disease. When we were first diagnosed, we believed those life moments, whether a major milestone or the seemingly small ones, would never happen. Today, we try and see each of those small moments together as a gift. It helps to get us through. And it’s a gift Augie and I are working every day to make certain others living with ALS will experience, and find that much needed peace and comfort somehow in this disease.

– Lynne Nieto

When Augie asks, you get to work! It’s my honor to be a guest author on the first Augie’s Quest email of 2019. We made it! Another year behind us, but don’t dwell on the past. Let’s prepare for what’s ahead and our pursuit of the ultimate goal – a cure for ALS. 2019 will unlock new mysteries of this dreaded disease. We must believe in creating change, not just hoping it happens one day. New year, new focus. Let’s do this!

I decided to write this on a day where I am really struggling, with the goal of not holding anything back. So, here it goes.

I was diagnosed back in March of 2013 at the age of 30, with my first noticeable symptoms dating back to the summer of 2011. Some would say my progression is slow simply because I am still alive, however, there is nothing slow about losing parts of your life or things that make you who you are.

ALS has destroyed so much. It’s decimated my physical body. I can no longer breathe on my own for more than a few minutes. So now a days, you will always see me wearing the mask to my bipap machine. I lost my voice, so I communicate through an eye gaze system. I can’t move on my own, so you will see me in a wheelchair. These things you can physically notice, but this disease doesn’t stop there.

The emotional and mental aspect, if you ask me, is even more devastating. It changed me and the person I loved the most – so much that our marriage didn’t survive. It crushes me. Some couples find a way through it, many do not. I am a young man. Everyone around me is having kids, building families, the things every man desires as he gets older. I am not, and it’s something I will never get over. ALS is an emotional roller coaster unlike anything you could ever imagine. If you’re not crying, let me tell you, I am.

This is where the search for new meaning, new focus, and new goals is what gives me hope. Despite all the challenges I face, I pride myself on my mental strength. My desire to inspire others to find their smile all while fighting to end ALS — it’s what keeps me going.

The new year is the perfect time to analyze ourselves and see what we do have in life, not focus on what we don’t have or what we’ve lost. 2019 brings new beginnings. It’s a time to move forward, not backward.

ALS can take and take and take, but I am still here. You are still here. Please join me in kicking off the new year with a renewed sense of appreciation for being alive today. Not yesterday, not last year, today. Let’s start with today.

Continue supporting Augie’s Quest so one day ALS will stop taking lives away and just be another disease we have treatments for, or God willing, a cure. 2019 – we are coming for you!

Stay strong,

Pat Quinn

Pat Quinn lives in Yonkers, NY and is an ALS advocate, the co-founder of the Ice Bucket Challenge, a friend and champion to Augie’s Quest and just an all-around awesome guy. Follow Pat at Quinn for the Win.

November is National Family Caregivers Month – a rather poignant and on-point month to celebrate caregivers. Another hallmark of November is, of course, Thanksgiving and the month we tend to reflect on what we are most thankful for. It is only appropriate to celebrate these two together—caregiving and thanksgiving—for it is the caring and giving by friends and family for which I am most thankful.

My husband, Collin, was diagnosed with ALS four years ago at the age of 41. I was right in the middle of prime caregiving for our two kids (7 & 11 at the time), plus the frequent babies who were in our care awaiting adoption as we serve as foster care parent volunteers for Gladney, a local adoption agency. Caregiving of children is what I loved most. It came easy. It felt natural. It is why I chose a career in pediatric nursing. However, despite all my passion and training, nothing can really prepare you for being the caregiver of a spouse. When we said our vows and I pledged to love Collin in sickness and in health, I truly meant it, but never dreamed I would be called to act upon those vows at the age of 40.

Caregiving encompasses so much more than just the physical day-to-day care. Tasks of bathing, toileting, dressing, grooming, feeding, etc., comprise only one component of caregiving. It is important to consider the emotional, social, and spiritual aspects, as well.

These are the areas where our friends and family have played a huge part in caregiving. From the beginning, they have exhibited so much love and extended unbelievable support and care to our family. Things like organizing memory-making vacations and outings, scheduling regular guys night on the back patio, frequent lunch visits by Collin’s prior work colleagues once he was no longer employed, learning how to work the accessible van and breathing machine so Collin can go on an outing without me, lacing up sneakers to run a race pushing Collin in a neon “stroller” contraption, helping fundraise for ALS research, and the list goes on and on.

These actions have provided tremendous emotional and social caregiving. In addition, our pastor comes to the house regularly to lend spiritual care and our church family has demonstrated lots of care and concern for our entire family. And the ultimate sacrifice and example of love has been Collin’s dad relocating from CA to be with us in TX to be actively engrossed in all aspects of his caregiving.

As the season of thanksgiving is upon us, I feel especially grateful to have so many caregivers in our lives helping us navigate the ever-changing, always challenging ALS world. Whether they are involved in the daily grind of physical care, intentional social interactions, lending emotional support or engaged in prayer with and for us, I am convinced we have the best caregivers around. My heart is filled with gratitude.

~ Emily Hadley

I met Augie and Lynne in 2010. My friend John Ondrosik/Five for Fighting knew my dad had passed away from ALS in 1992, and for that reason alone, he felt I needed to meet Augie.

We met in an Upper West Side of Manhattan restaurant, Augie then using a wheelchair and just beginning to lose his ability to speak. But I understood exactly what he was saying, he had such a similar speech pattern to that of my dad’s. When my father had ALS, for lack of a better word, I had come to know that ALS accent so well.

It’s not hard to fall in love with Augie at hello. He’s a superhero of the most human kind. And so our friendship began.

This included a trip to the ALS Therapy Development Institute, meeting Dr. Steve Perrin and his incredible team of scientists, and many ALS mice. After that tour in Cambridge, I asked Dr. Perrin about the significance of all the data they were collecting and I remember him saying one thing that really struck me: “When we get to ‘X number’ of data points, we’ll cure ALS.”

And today, we’re getting closer and closer to hitting that mark because of Augie’s Quest.

This is a mission very close to my heart, as my family can attest to, having already suffered the brutal onslaught of this disease. My father was a classic ALS patient—two years and out.

Augie, on the other hand, wasn’t going down that easy. He’s managed to pick himself up to a higher level of humanity that I haven’t seen in most healthy people.

All of you know Augie is a complete force of nature—emotionally, intellectually, spiritually, physically and via his wicked sense of humor.

I am humbled and honored to be Augie’s Quest’s awardee, but I’m not here as this year’s ALS Champion. When I gave it some deep thought, that distinction of an ALS Champion belongs to Lynne Nieto and everyone who has cared for someone with ALS.

This includes my mother, who just turned 80 recently. She came up from Florida to celebrate the Tradition of Hope with us, and to see her son, as Jewish mothers do. She truly knows what it means to care for someone you love with ALS.

About a year ago, I hosted a private event and screening of ‘Augie,’ the documentary directed by James Keach and produced by Eric Carlson. As so many of you know, the film documents Augie’s battle with ALS as he searches for a cure using his business acumen.

“But at its heart, it’s a love story whose central characters have a will to live that we should all embrace,” as James Keach said.

At that screening I shared some opening remarks. For the fun of it, I put together a list of some of the greatest couples and greatest love stories of all time: Romeo and Juliet, Humphry Bogart and Lauren Bacall, Mark Antony and Cleopatra, Ronald and Nancy Reagan, John Lennon and Yoko Ono, Coretta Scott King and Dr. Martin Luther King… and even Beauty and the Beast, and of course Kermit the Frog and Miss Piggy.

So tonight, I’m adding Augie and Lynne Nieto to this elite list of the greatest couples and love stories the world will ever see.

As we all know, ALS is known as Lou Gehrig’s disease. So if Lou Gehrig was the pride of the Yankees, then Augie and Lynne are the pride of our hearts and souls.

I swear, every August my body goes into preseason mode. Ok, well not so much my body anymore as much as my brain.

It’s understandable, I mean every August for 18 years I got myself ready for football season. I was 11 years old the first August I actually got to be a real football player. Some how I managed to play until I was 29, going into my seventh season in the NFL. That’s when my body made it clear it was done playing.

I was diagnosed with ALS 6 months later. I was only 30 years old, which I thought was young, but now more and more I hear about people fighting this battle even younger than me.

Last year, I found myself having to get ready for football season yet again because my old team, the Tennessee Titans, invited me to help out with their special teams and named me a captain for the season! They even signed me to their official roster for a day and designated me a “Titan for Life!”

I am pretty sure I was the only person with ALS to be on an active NFL roster post-ALS diagnosis, but thank God they didn’t put me out on the field or I would have hurt someone. Head Coach Mike Mularkey and General Manager Jon Robinson made sure I was still part of the family.

So, I spent the season studying film and trying to help the players improve. I even gave a few presentations to the team about upcoming opponents. I was on the sidelines for every game, home and away. It was awesome.

I don’t have to tell you how brutal this disease is, if you’re reading this, you probably know. From what I’ve seen, I’m thankful that I’m still moving, five years down the road. I battle every day to stay positive and do what I can. I have found that to be a big key for me… battling and staying positive. Each is vital to me in facing another day, in facing every day.

I believe that if God still puts breath in my body, then there’s still work for me to do. I trust that God will give me the strength I need.

The same is true for you—so don’t just sit there! Find something to fight for. Is that your family? Finding a Cure for ALS? Or inspiring a bunch of athletes and fans into finding a better version of themselves?

Whatever it is, get that positive attitude and go after it.

Things are different for me this year, compared to last year. I am using my wheelchair a lot more. My speech is tougher to understand. These things made me unsure about being around the Titans team again this season.

I don’t want people feeling sorry for me. But I found my reason to fight. I’m still here. There’s still more for me to do!

I go in to practice a couple times a week with a positive attitude. So what if I’m in my chair and most of them don’t understand me when I talk? And guess what? It’s good for them to have me around, and it’s good for me to be around my team.

Life is hard, but I can’t complain. I have a reason to fight and a positive attitude. Oh yeah, and it’s football season!

~ Tim Shaw

This is my ALS: A Love Story. It’s about my husband, David.

“Love is patient…”

Hmm. The poet of that popular wedding reading probably wasn’t envisioning a husband waiting at a porta-potty at Mile 14 during every one of his wife’s five marathons to help her in and out of her trike. But that’s what our love looks like.
“In sickness and in health…”

We couldn’t have imagined 8+ years ago that those lines of our wedding vows would one day rule every single decision we make. ALS has meant giving up on children and moving away from a city we loved. It ended my career and has shaped his.

“Til death do we part…”

Ah, yes. When I was diagnosed with ALS in May 2014, I worried that I would never have another purely joyful moment. Instead, happy memories are sweeter and laughter is easier to come by. We don’t wait to do the things we want in life now because we know that tomorrow isn’t guaranteed. It isn’t even expected.

Somehow, we managed to nail the reading at our own wedding, a poem by Lloyd Lee Wilson: “Slowly we learn that we are all broken, all less than perfect, and that God loves us, each one, wonderfully even so. Slowly we learn that the real love for one another we crave is not the ideal love of my personal façade for your façade, but the imperfect intent to love that my flawed self can offer the real you.”
Because that’s what our love looks like.