ALS Champions Head to Washington as FDA Issues Guidance Document for Potential ALS Treatments

On September 23, 2019, the Food and Drug Administration (FDA) issued its most recent guidance document for the development of potential treatments for ALS. Many representatives of the ALS community – patient advocates like our friends Phil Green and Matt Bellina, researchers, organizations like Augie’s Quest, ALS TDI, Team Gleason and IamALS – gathered in Washington to collaborate with government officials to help fast-track the funding, clinical research design, and focus needed to uncover effective treatments and an ultimate cure for this disease.

You can read general takeaways and the entire guidance document here via our research partners at the ALS Therapy Development Institute.

I was diagnosed with ALS during my senior year of college at the University of Oregon, on October 25th, 2016. Despite having a rather fast disease progression and struggling to simply walk to class, take notes and much more, I finished out the school year strong and was chosen as the Sports Business Student of the Year in my class.

Don’t get me wrong… ALS has been an absolute detriment in my life. This disease has presented the most difficult physical and mental challenges that I never could have imagined were even possible, especially at my age. I’ve witnessed the damage it has done to my wife, family and friends, as they’ve watched me progress over the years from a young, thriving 21-year-old to a now paralyzed young man who is dependent on a ventilator and confined to a wheelchair.

ALS has taken away my ability to do so much. I could go on and on about the ugly, like how I’m typing this using my eyes in a hospital bed as I battle with pneumonia.

But I don’t just want to write about all the bad that ALS has done in my life. In a lot of ways, it has been a blessing in disguise.

ALS has shown me how important the little things are in life. It has taught me to not dwell on the things that I can no longer do or control, but to celebrate the wins every day that I still have the ability to achieve. It has helped me value the close relationships that I have with the people I love most. It has taught me how to be vulnerable, and how to be comfortable with being uncomfortable. It has given me purpose in living every day to the fullest and leaving my mark in this life. It has given me the courage to fight for thousands of others and their families who suffer from ALS.

Osiel Mendoza celebrating the San Francisco 49ers “Dwight Clark Day” with family and friends. Photo taken August 7, 2019.

A few months after college graduation, on September 8th, 2017, I married my middle school sweetheart and the love of my life, Bella. She’s stuck by my side through this tough journey and takes care of me every day. I’m very lucky to have her in my life. I was able to walk down the aisle with her, dance with her, and we even went on a beautiful honeymoon to Hawaii. We’ve shared so many special moments and memories that I will never forget.

Even so, I’ve had a deep battle with depression and social anxiety because of what ALS has done to my life. There were moments where it felt like nothing would ever get better. I felt like I was sinking into a deeper hole, day by day, with no thought of how I was going to get out. Luckily, I have an amazing support system in friends and family that have helped me get out. I finally feel like my normal, driven and motivated self again. It’s hard to lose your identity as a person and feel lost, without a purpose in your life. But looking on the bright side of things and being grateful for every single day that you are alive is the recipe for success and happiness, in my eyes. I’m ecstatic that I am able to look at ALS as a positive milestone along my life journey. The ALS community is filled with so many fighters and families that are so helpful in providing advice and resources. And finally, the generous supporters of this cause have given me hope that we will see an end to this disease.

Keep fighting with us! Don’t ever give up on us, because we are fighting every single day and need your courage and strength to get to the finish line of ending ALS. I hope to eventually attend an Augie’s Quest event where we will be celebrating a cure. I’ll even throw a few shots down my feeding tube to show you how excited I am that the fight is over.

Augie’s Quest to Cure ALS is dedicated to changing the experience of people living with ALS. Today, there is real hope, like never before. With Augie’s Quest, ALS doesn’t stand a fighting chance. Support our Quest to find a cure by making a donation.

I was diagnosed with ALS at only 26 years old — back when I was a caregiver for my mother, who also has ALS. Until then, it never crossed my mind that I would get this disease. I felt like our family had gone through so much already, that it would be so unfair, and impossible, for me to also get this disease. You see, we live with familial ALS. Which means, for us, my diagnosis marks three generations in a row with ALS.

Did you know I was a photographer before I was diagnosed with ALS? For a time after my diagnosis, I almost forgot myself, having given up photography entirely when ALS first came into my life.

Then one morning, I cried like a baby after I visited my old broken photography website. It had been more than a year since I had done a shoot, picked up my trusty camera. I missed my creative outlet so much. But, instead of being depressed, I mustered up my creative freedom, inner strength, ALS resolve and challenged myself to use my camera again. Fact is, even with ALS, I still had that drive to become a better artist; despite my increasing physical limitations. I knew it wasn’t going to be easy, but I knew the rewards would be worth it.

With photography, I’d find a way to get my life back. So, after my diagnosis, a tough prognosis, after the Ice Bucket Challenge, I choose to evolve with my ALS circumstances and find creative solutions to overcome my progressive limitations.

I’ve since hacked Frankie (my camera/wheelchair combo, it’s short for Frankenstein, lol). And to this day, I continue my passion for photography. I aim my lens at the mistakenly overlooked, even if I can no longer physically hold the camera … embracing and encouraging vulnerability as a means of solidarity.

Photography helps me share my ALS story; and others, too. It’s critical we continue to shine a light on this disease, so no other family has to go through what mine is facing. The pop culture spotlight of the Challenge five years ago, needs to live on and truly impact people’s lives.

I feel like I will figure out a way to take pictures no matter what stage of my disease I’m in. I’m appreciating this now because I know later on I may not be able to do it. It makes it bittersweet…bittersweet, but it makes you focus your passion. It makes you want to cry every day. For the beautiful moments and the hard moments.

I feel like I could really make a difference, sitting in my chair, and doing what I love, capturing life in all of its many forms, with and without ALS. And that’s frickin’ cool.

One thing I’ve learned in the years since my diagnosis, in the five years since the infamous Ice Bucket Challenge:

I have ALS. ALS doesn’t have me.

Google + AI + ALS TDI = Working to Better Understand ALS

Fernando Vieira, M.D.

A few months ago, I shared an update about our innovative partnership with Google in this Science Corner. Augie’s Quest support for this particularly exciting work is also sparking a lot of interest in this unique effort, and I thought I’d share a bit more insight into the genesis of this study and collaboration. The below is excerpted from PeriodicALS, a monthly newsletter developed by ALS TDI:

As ALS progresses, loss of muscle function eventually takes away a person’s ability to walk, write, speak, swallow, and breathe, thus shortening their life span. People with ALS also develop dysarthria, or impaired speech, which makes it harder to speak, using their own voices and be readily understood. Some refer to this change in people with ALS’ speech as the “ALS accent.”

During a series of wide-ranging discussions between the ALS Therapy Development Institute (ALS TDI) and Google about ALS, conversations repeatedly circled back to this specific problem of impaired speech. Michael Brenner, PhD and Julie Cattiau at Google confirmed that this was the type of problem that Google could really help with.

Over the past number of years, the clinical operations team at ALS TDI have found that even people with severe dysarthria (speech impairment) could be understood by close friends and family members. When Michael and Julie at Google learned this, they wanted to explore the idea that, with enough data, an artificial intelligence (AI) tool could learn how to interpret an impaired voice. Google has a strong track-record for building tools that can recognize speech and translate language. They saw this as an opportunity to train their standard speech recognition algorithms to identify impaired speech in much the same way as it understands accents. The premise being that existing AI tools hadn’t heard enough ALS-affected voices yet to optimize an algorithm so that it could recognize them.

Dr. Brenner argued, “Speech recognition should work for everybody.” People with dysarthria and other physical limitations should be able to have access to written and spoken communication – email, the internet, social media, options for independent access to reading, television operation, and more.

To build tools that facilitate verbal communication, ALS TDI has been recruiting people with ALS who are willing to record their voices. Some have recorded hundreds or thousands of specific phrases in order to train and optimize Google’s AI-based algorithms, thus mobile phones and computers can more reliably recognize and transcribe the phrases expressed. This might allow people with ALS to independently send text messages or to generate spoken commands using Google Home devices. The more voice samples integrated into the Google AI model, the better the model will perform.

To that end, anyone living with ALS is encouraged to participate in ALS TDI’s Precision Medicine Program. This will leverage Google’s speech recognition technology to build assistive applications that people with ALS can use to communicate again.

Click here to read more about Google’s use of AI to better understand impaired speech.

My name is  Sophie Wallace, and I just turned seventeen. I live with my mom, two brothers, two dogs, and one fish named Franc. I like to bake and spend time with my friends. I’m a cheerleader and the president of the ALS club at my high school. I’m not exactly sure what I want to be when I’m older, all I know is that I want to help people.

My dad’s is Boomer Wallace and he was my best friend. He grew up in Indiana and from what I hear, he was a pretty funny person to be around as a kid. My dad was the life of the party. He always knew how to make people laugh and never lost that quality no matter how sick he became. He also loved music.  I can’t remember a day I didn’t wake up to him blaring The Grateful Dead or Turnpike Trubadors in our kitchen.

My dad was diagnosed with ALS in June 2016, and throughout the rest of his life, worked tirelessly to #EndALS.  My dad’s battle with ALS was hard for everyone in my family. My parents were divorced and so a lot of his care fell on me. I helped with anything I could; from making dinners to managing his pic line treatment.

Something I want other kids who have a parent or loved one living with ALS to know is that there is hope. When my dad told me he had been diagnosed he also said that ALS is incurable that he was going to die. This was the hardest thing I’ve had to accept, but my dad’s strength, love for life and determination remains with me.

Not a lot of people know what ALS is and it can be hard for friends to know how to help you and your family. I can remember googling, “My dad has ALS, what now?” or “What to do when your parent has a terminal disease?”

There’s no guide book and everyone’s situation is different, but something that has really helped me is working to find a cure. You can make a difference in finding a cure for ALS, just through raising awareness or donating. I got my friends and school involved in fighting ALS by creating an ALS club at my school. We have fundraisers like bake sales and partnering with local businesses to help raise money and awareness in our community. My coach and cheer squad have pitched in too. We sold scarves at football games and raised over $1,000 for ALS research. My one goal in ending ALS is to help find a cure so another kid does not have to lose a parent to this disease.

If you want to join the fight in ending ALS there is a lot you can do to help raise money and awareness, from starting a fundraiser, donating or to even just a post about ALS on social media, anything helps.

As a loving father of four wonderful children (Arianne-17, Hunter-15, Parker-11, Whitney-8) and a husband to a smart, talented, and beautiful wife (Jennifer), my ALS diagnosis in August 2018 came as a complete shock to us all!

Even though I participated in the Ice Bucket Challenge in 2014, I really had no idea what ALS was and didn’t understand what amyotrophic lateral sclerosis (ALS) is – and certainly had no idea of the devastation that it leaves in its wake.

I was fortunate enough to connect with Augie’s Quest shortly after my diagnosis, and was welcomed into the family by Augie, Lynne, Shannon, and the rest of the team immediately. I was honored and humbled when Augie invited me to join his Leadership Advisory Council at Augie’s Quest.

This time last year, I was waiting for a June appointment for an EMG after having my first neurologist consultation to figure out why my muscles were twitching for more than a year.  At that time, I was not aware that it was just ALS Awareness Month, even though my research indicated that my issues and symptoms could possibly be ALS.

I am encouraged by the many campaigns and fundraising programs held this time of year by corporations such as Orangetheory Fitness (big shout-out for raising the bar each year – bringing in $4.5 million this year alone!), Crunch Fitness, and Dutch Bros to name a few. These programs help raise awareness to a broader community, not to mention bringing in a tremendous amount of money for research to help us end ALS.

In the words of our friend Augie Nieto, “ALS is not an incurable disease, it is an underfunded one.“ Without increased awareness, we would be challenged to raise the urgently needed funds to spur this important research for effective cures and treatments forward.

As a person living with ALS, I treat every day as an opportunity to increase ALS awareness. Every day is ALS Awareness Day. Every month is ALS Awareness Month.

While attending the University of Washington in Seattle, I was fortunate enough to be a member of two Rose Bowl football teams, one of which won the 1991 National Championship. Shortly after graduating in 1993, I left Seattle for Colorado, then Massachusetts, Arizona, and California. In 2005, I moved back to Seattle and developed some deeper roots in the Pacific Northwest, up until we moved back to Southern California almost two years ago.

Since my diagnosis, I have been actively involved in various activities and organizations (Augie’s Quest, I AM ALS, Team Gleason, ALS TDI) to raise awareness and make a difference in the fight to end ALS. I have appeared on several podcasts to talk about ALS, including the GoHuskies Podcast for the University of Washington, where I was a member of. My story was also featured in the GoHuskies Magazine which is distributed to UW Athletics season ticket holders. I am also producing and hosting my own podcast called the I AM ALS Podcast, on which I interview top researchers, showcase some incredible in the ALS community, highlight leading ALS organizations, and discuss other important and topics for the ALS community.

Given my link to the Seattle area, I immediately wanted to participate in Augie’s Quest’s Cure ALS Golf Classic in Seattle September 9^th, and get my network of friends involved to make a difference.  This year’s tournament will feature one of my friends and ROOT SPORTS personality, Angie Mentink. Hopefully, my participation can help the Augie’s Quest team make this tournament an even bigger success than it was last year.

There are always opportunities to educate more people about ALS, and really make a difference in this fight… far beyond the official ALS Awareness Month of May.

~ Phil Green

Brian Wallach is an ALS Warrior on a mission to win this ALS fight, to unlock critical breakthroughs for not just ALS, but Parkinson’s, Alzheimer’s, Frontal Temporal Dementia, and beyond and save the lives of millions of people. He founded I AM ALS in January 2019 with every intention of making this dream a reality, and is committed to working alongside Augie’s Quest and the entire ALS community to find a cure, and not in the next 20 years, but in the next three.  

A practicing attorney, former U.S. Attorney and staffer for President Obama, Brian recently testified before Congresswoman Rosa DeLauro, Chair of the House Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee on the underfunding of ALS research during the subcommittee’s Public Witness Day.

“I sit here filled with hope. Why? Because we can actually cure ALS. How? By fully and boldly funding the fight against ALS,” Brian says in his opening comments. “The research that this subcommittee has funded over the last decade enables me to say, and truly believe, that it is no longer a question of if we can cure ALS, but when.”

Brian is a man after Augie Nieto’s own heart – and one we’re extremely excited to work alongside (be sure to check out a recap of our time together with Orangetheory Fitness at Wrigley Field). It is going to take a village to #EndALS, and having Brian as a dynamic leader and partner is key to our success. Read and see more about Brian’s story in his own words (also available via https://iamals.org/brians-story/)

This is an ALS Story. It happens to be my story. But it could be your story. Your spouse’s story. Your child’s story.

I was diagnosed with ALS in November 2017. I was 37. With two girls under three. And I was told then that this disease will take my life. Rob my daughters of their father. And my wife of her husband.

That, however, is not how my story will end. Why? Because, together we are going to cure ALS. The first time I heard the words “ALS” from my doctors was on August 14, 2017. As those words crashed around her office, my family and I asked questions. Trying desperately to make sense of this diagnosis.

Wasn’t I too young to have ALS? How could I have it if we have no family history of ALS? Aren’t there parts of my symptoms that suggest something else, anything else?

The answers didn’t come that day. There is not yet a test to diagnosis someone with ALS. Instead, it is a diagnosis that is reached when all other options are exhausted. What doctors call a diagnosis by exclusion.

And as we were waiting for that diagnosis we read everything we could find about ALS.

Let me start with the punchline: there is no cure right now for ALS.

• Every 4.4 minutes someone in the world is diagnosed with ALS.
• Every 4.4 minutes someone dies of ALS.
• In the time it takes you to read this document someone’s son will have been diagnosed with ALS and someone’s mother will have died from ALS.
• ALS is a disease that turns your body against itself. It causes your body to attack itself. To wear out its muscles until you can no longer move your hands. Your arms. Your legs. Eat. And ultimately breathe.
• Lou Gehrig had ALS. So did Stephen Hawking.
• So do nearly 500,000 people around the world.
• One out of every 500 Americans will be diagnosed with ALS. Those diagnosed are young and old, male and female, and every skin color.
• ALS doesn’t discriminate. It can affect anyone.
• 90% of the people diagnosed with ALS have no family history of ALS. 90%
  On average, they will live 2 to 5 years after being given this diagnosis. 

So this story, my story, is actually our story—because if ALS can affect anyone, curing it takes everyone. The good news is that our story can have a happy ending.

That’s because ALS is not an incurable disease; it is an underfunded one. Indeed, even though ALS research is badly underfunded, researchers are closer to finding a cure than ever before having identified over 40 genes connected to ALS.

In fact, the tools are in place to defeat ALS. The ALS community has the necessary building blocks of a movement for a cure: patients, advocates, and organizations striving for new recognition, new commitments, and new breakthroughs. They remain hopeful, driven, inspiring and inspired.

What is missing from the fight right now is a patient-led, patient-centric movement that can empower those in the fight and bring those not affected by the disease into our struggle.

So that’s what we have built with I AM ALS.

A patient-led, patient-centric movement that will drive collaboration, build and provide critical missing resources for the ALS community, organize and empower the ALS community, and drive increased awareness of ALS in order to generate millions of dollars in new funding to accelerate finding a cure. 

Thank you for joining us—the patients, caregivers, advocates, and doctors at the helm of I AM ALS—in this fight. As I sit here typing these words, I am filled with hope because I truly believe that I will live to see a cure for ALS. A cure that will allow me to raise my girls with my wife. To be there for the father-daughter wedding dance. A cure that will change the lives of tens of thousands by ensuring that no patient ever has to be told, “you have ALS, get your affairs in order.”

Please join I AM ALS and Augie’s Quest to Cure ALS – like, follow, share and sign up for the latest in news and efforts to #EndALS.

Check out our May 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!

Losing your voice. It is one of many challenges people diagnosed with ALS will confront. For many, it’s one they fear most over the course of their disease, and with good reason. Losing the ability to speak, is usually a slow progression, but over time it becomes increasingly more difficult for people with ALS to vocalize their thoughts clearly. It can also be difficult for others to understand someone who has a neurodegenerative condition like ALS, that attacks the very muscles we use to make vocal sounds, verbalize and simply talk.

Many people with ALS will use communication devices at some point, turning to onscreen key boards that respond to eye-gaze technology or other commands. For Augie, he controls his device via a rollerball that he maneuvers with his toe. Pretty remarkable technology that’s come a long way, but yet these communication tools are still too often slow and frustrating for everyone involved.

Our team of scientists at ALS TDI, through an exciting new partnership with Google, is working to change that. Working together, we hope in the near future there will be a variety of personalized voice recognition options available to improve communications for people with ALS.

In the past several years, voice recognition modeling has advanced significantly using artificial intelligence and technology, but it still doesn’t work well for those that are voice impaired. That’s in part because no one has collected large enough data sets of vocalizations from people with ALS, or other disabilities where speech is affected, like cerebral palsy or Down’s syndrome, as has been the case in collecting data and examples to decipher accents and dialects.

The vision is: the more “voice impaired” samples we can collect and integrate into the Google AI model, the better its voice recognition technology will be at recognizing the varied or impaired speech patterns of people with ALS, and others. With the limited data already collected, results are proving positive. It is exciting, but we need more data. We need more voices!

That’s where people with ALS come in. By participating in ALS TDI’s Precision Medicine Program (PMP), anyone with ALS can help advance this exciting voice recognition technology.  Through PMP, we are collecting voice recordings from people with ALS and will use these data to optimize Google’s AI-based algorithms and work to apply it to our ALS learnings and discoveries in the ALS TDI laboratory.

Every bit of new information we unravel about ALS through our PMP efforts help us reveal other changes happening to the body, simultaneously, giving us new ways to learn, consider and advance new treatment options for ALS.

Such technological advancements are coming fast, and may one day allow people with ALS to never lose their voice – among other things! Strategic partnerships, like the one we now have with Google, could be gamechangers for our incredible ALS community.

If you are a person with ALS, or know someone who is, please have them reach out and connect with our team to participate in this exciting work.

Hi everyone! May is one of my favorite months of the year. ALS Awareness Month allows so many members of this important community to tell their stories, and rally around the importance of ALS research. This year is no different, and there are so many ways you can show your support. Please consider some simple actions that have a huge impact!

1. Add a Frame to Your Facebook Profile Picture

Join me in changing your Facebook Profile Picture during ALS Awareness Month! Click HERE to add this frame to your photos – invite your friends and family to do the same.

2. Consider Hosting a Facebook Fundraiser!

It’s easy to join the quest to #EndALS – start with your own fundraiser for Augie’s Quest!

Visit https://fb.com/fund/augiesquest1/  to start.

A box will automatically appear that says ‘Let’s start with the basics,’ and Augie’s Quest will be pre-selected as your charity of choice.

You can then create your personal fundraising goal, and select the date your fundraiser will end. To host your fundraiser for ALS Awareness Month, choose June, 1, 2019 for the end of the fundraiser. Or keep yours open for longer! Once this is completed, click ‘Next!’

In the second step of creating your fundraiser, you have the opportunity to share why you selected Augie’s Quest as your charity of choice during ALS Awareness Month. To begin, you will select a title for your fundraiser. Suggestions might include:

Support Augie’s Quest to Cure ALS!

Give to Augie’s Quest during ALS Awareness Month

Join me in my fight against ALS!

If you have a personal connection to ALS, we encourage you to share your experiences and why our work matters to you. One example of this section can be found below:

Once this section is completed, you can click ‘Next’, add a photo, and launch your campaign!

Thanks so much for your support this month. Together, we can #EndALS!

~ Augie

Check out our May 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!

In March, I had the pleasure of attending the 14^th Annual BASH for Augie’s Quest in San Diego. The event provided an opportunity for fitness industry leaders to come together and celebrate their contributions to the ALS research space, while also raising nearly $1.9 million for ALS research.

Being in San Diego did give me the opportunity to escape some cold Massachusetts weather, but the highlight of my weekend was having the opportunity to share exciting updates in ALS research with families in Southern California. For these families, and so many more around the country, there is so much information out there about ALS – the best plan of action for treatment, the best hospitals and doctors, what to recognize in the progression of the disease.

As a scientist and researcher, I have a little different perspective on things I want these families to know. Please share this with friends and family throughout this month, as we hope to build as much awareness as possible to help end ALS once and for all. May is ALS Awareness Month, so we need your help to spread the word!

1. Today, there is hope for those diagnosed with ALS.

2. You have the opportunity to be a part of that hope.

As the Chief Scientific Officer at ALS Therapy Development Institute (ALS TDI), I am proud to say that we have the most robust pipeline of potential ALS treatments in our entire history.

ALS is an incredibly complex disease, because each person’s ALS is totally unique. We know that we will need several distinct treatment options to support the diversity of the ALS community, and give every ALS patient the chance to fight this disease.

ALS TDI is unique because we understand the need for a comprehensive approach to ALS treatment; and with so many drugs in the research pipeline all under one roof, we are able to quickly apply findings across multiple projects and accelerate our research. Because of the support Augie’s Quest has offered us, I am confident ALS TDI is equipped to develop treatments as fast or faster than anyone else. And today, ALS patients can help – help themselves and the research.

To date, we have enrolled more than 500 individuals with ALS in our Precision Medicine (PMP) program. Through PMP, we monitor areas like movement and speech – two key functions affected by ALS. All of our clinical assessments are captured using in-home technologies. Furthermore, each participant has access to their own data so they can be empowered by information to work with their physicians to make the best decisions about their own care. We are committed to personal and open relationships with people with ALS- and we hope that by partnering with new patients in the program, we can make huge leaps in the research process.

None of this would be possible without the support of Augie’s Quest and the entire ALS community, and I am so optimistic for what the future will bring. From Boston to San Diego, there’s no community more important to me.

If you know someone with ALS who could benefit from these efforts – reach out! To learn more about the Precision Medicine Program, please visit www.als.net/precision-medicine.