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.

This is my ALS: A Love Story. It is about my wife, Ali.

On May 17, 2016, as Ali and I were stuck in traffic heading to the neurologist I asked, “If we get bad news today, can we stop at the first bar we see?”

Ali said, “I’ve been waiting for you to ask me that.” To which I responded, “Well?” And then Ali, in the kindest of ways told me, “Boomer, that would be quitting.”

But later on that day in May, some four hours after that initial conversation. Ali and I were crying pretty good, stuck in traffic. (I mean, the doctor broke our hearts, but the traffic was killing us!). I turned to her and asked, “Does this mean you won’t marry me?” Ali turned weeping to me and said, “It only makes me want to marry you more, let’s go to the courthouse in the morning.” It takes one hell of woman to sign up for this. As a friend said then, which may or may not be true, “You’ll get her best years, and she’ll get your worst.” One thing is very likely to be true, I’ll make her a widow much too soon.

We were engaged 45 days later. And married nearly one year ago.

I just can’t express enough my love and appreciation for Ali. I don’t have the words. For those of you that don’t know, Ali was my High School sweetheart. I spent the best year of my life dating her. We screwed it up in college and found our way back to each other in our early 40s.

We promised each other the next 40 years. We wouldn’t screw up the second chance, the next 40 years were ours, together. We planned and dreamed about our life together and the adventures and happiness to come.

Then it happens. Your squash game falls apart and you start twitching. Falling for no reason. Unable to bend your legs. Can’t sleep, although exhausted. Bad back, must be. But things aren’t right, and the doctor tells you have ALS. “No treatment, no cure and 50% of patients die within 2 years. Get your affairs in order.” Dreams of 40 joyful years together blown up in 2 sentences. Boom. Done. Over.

In my opinion, that’s not the real tragedy. Not the two to four years of physical suffering and mental anguish that comes with this disease. It’s the time I won’t get to spend with Ali. I think it’s worse for her. All she can do is watch and help and comfort. I have the relief of death, she has the pain of living.

She was right, Ali, on that day in May.

Because I’ve lived, laughed and loved so much in the last year. I’m glad, too, that my children won’t remember me in a wheelchair feeling sorry for myself.

Instead, they’ll think of me in moments like last night…the moments to live for, with green hair, celebrating my beloved Philadelphia Eagles at the Super Bowl. And that’s just one of many amazing, once-in-a lifetime moments, I’ve spent with Ali.

This is my “ALS: A Love Story.” It’s about my family, my Galentines.

I was diagnosed with ALS in April of 2017. My wife and I will have been married 15 years this coming May.

When your last name is GALENTINE – “Just like Valentine but with a G”- Valentine’s Day becomes Galentine’s Day. It’s the one day of the year that most people pronounce my last name right!

I have been a songwriter in Nashville for nearly 25 years. I go by “Bryan Wayne” in the music world. It is only fitting that I met the love of my life because of a song I wrote.

I had written a song with my bud Big Kenny (Big & Rich) and neither one of us had anything major happening in our careers yet so we were both short on $$$. A friend suggested we record with a guy who had a little home studio in his townhouse. It just so happened that his platonic roommate was my future wife.

And even crazier, the very first day I met her she was home from work sick! So one of my best days was literally a day when she was at her worst.

The song was called “Fly” and it’s all about chasing dreams, appreciating every moment, living life to the fullest, etc. Thankfully it wasn’t a song about pickup trucks, drinking, and partying in a field. We ended up giving out CDs of the song as a gift on our wedding day. And I have recorded new version of the song for an upcoming record I’m working on, where I’m putting MY vocals on songs I’ve written over the years, in the event that ALS unfortunately takes away my ability to speak, and sing.

I am coming up on one year since my diagnosis. And I won’t lie, it’s terrifying. I know the road ahead is not going to be easy. Barring a cure, I know the odds are not in my favor that I will live to see my sons graduate high school, let alone college.

But ALS has taught me to try my best, to not take a single second for granted. Some days it’s easier said than done, but I’m trying.

And it’s 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 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.

To support the Galentine’s you can do so here: https://www.generosity.com/…/help-bwayne-finish-his-record-…

This is my “ALS: A Love Story.” It’s about my husband, Matt Bellina.

I first me Matt in August of 2002 when we were both Virginia Tech. Matt thought I was a “drunk college girl” (I was not) and gave me dead flowers out of a dumpster. I couldn’t remember his name I was so flustered by this cute boy that I referred to him as “the hot one” for a week until we met up again.

Funny to think that’s how we started. Now, we have been in each other’s lives for over 15 years. Matt was officially diagnosed with ALS in April of 2014, so our family is coming up on four years of living with the disease.

Our life with ALS is made a little bit easier because of Matt’s inability to accept his diagnosis as a roadblock. He is very much in this fight, and mostly for others dealing with terminal illnesses, ALS and otherwise. Of course, his humor shines through most, lifting us all up when things don’t go according to plan in our day-to-day life. With ALS, that can happen quite a bit.

Before our diagnosis – Matt surprised me one night by having a friend drive him from campus to my townhouse. He crept under my window and started playing his harmonica until I came outside. And now, after our diagnosis – I have so many moments I cherish with Matt. Like when I come downstairs from putting Pax, our youngest son, to bed and see him cuddled up with our older boys, JP and Kip, reading a bedtime book, or discussing the day, or talking about God. It’s those times where Matt is just being a good dad to our boys, that really get me.

Matt is my heart. I do most everything in my life with his voice in the back of my head. If it’s something I know he wouldn’t be proud of, I know it’s not a good idea. I appreciate his understanding. I am not the easiest person to live with, but he sticks with me. He puts up with my moods and frustrations and still loves me, through it all.

On our first Valentine’s Day together, we promised not to get each other anything. I stayed true to that pact, and got him nothing. He made me a handmade card (I still have it), a giant balloon stuffed with fun things, and other trinkets. I looked like a chump. Let’s just say he’s the romantic in the family!

When it comes to ALS, everything in life becomes weird. Things you never thought you would do, are now every day occurrences. You have to laugh. and love. You have to love and grow together through it all, or you are going to fall apart. And for us, to live with this disease, that falling apart simply wasn’t an option.