A Veteran Talks

“Hey kid, the good days will always outnumber the bad,” he said to me with a kind smile and wink. We were sitting side by side in the infusion center at Massachusetts General Hospital receiving therapy back in early 2002. Bill and I were on the same treatment rotation and had become friends. He had been front and center during the Cuban missile crisis in the Navy. I was currently on active duty as a Navy Nurse in CT. He was receiving the treatment appropriate for his neuro muscular condition. I was receiving it on the slim chance it would help, since one of my lab values was unusual when all other evidence pointed directly to the inescapable ALS. I was 26 years old, scared about the future, sitting next to my fellow veteran, and found his words were of great comfort to me.

Eighteen years later, I find that the good days have always outnumbered the bad and I suspect it will continue to be this way. The bad days have included the shattered dream of having children of my own as my siblings and friends continued “normal life.” The bad days also included the end of a young marriage in a bitter divorce. But, as you know, ALS is relentless in breaking bodies and hearts.

Today, we all find ourselves in unprecedented, turbulent times. This can be very unnerving, especially, when combined with ALS. My partner and I went into strict isolation in mid-March and spent three months together 24/7 as he was my only caregiver. We struggled through the social isolation, my guilt about depending completely on him and figured out how to settle into a new type of lifestyle. Our days now have a simpler rhythm. Watching flowers blossom is a big treat! The garage is not for my van anymore. It is set up for socializing with neighbors and family at a safe distance complete with a screen tent, carpet, lawn chairs and flower pots to line the entrance!

During these turbulent, changing times, I have some good news to share. My partner, Leif, and I got engaged a few weeks ago and are planning a very small ceremony October 3^rd! WHAT??  Who marries a 44 year old woman who has ALS? Evidently, Leif does. We have been living together for eight years and he figured if we could be together 24/7 for three months and still like each other, we might as well give marriage a shot.

I pray that as we all find new paths forward, excavating our former lives, positive things will surface. I am pleased to learn that ALS clinical trials have used the past few months to pivot how trials are run. They are now maximizing the use of video appointments to gather information and reduce in person visits. The field has also shifted to investigating breathing measurements that can be taken at home and doing safety labs locally. These changes bring the possibility of including more people in ALS trials by reducing some of the barriers.

We will all continue to have bad days. Life is just like that. My wish for you is that your good days always outnumber the bad. Keep your heads up and seek out the positive.

Sending my love from NH,

Ellen Corindia

There are dozens of country songs that talk about the love between a little girl and father. I danced with my dad to one of those songs, I Loved Her First by Heartland, at my wedding 13 years ago. Though, to be honest, I was dancing on his feet every chance I had since I took my first steps. When I was a young girl my dad was my Prince Charming. He taught me to fish, to ride a bike, to shoot, and to drive a car. He would take the red eye home from his business trips to ensure he was at every sporting event and he never missed an important family moment. While my mother, my brothers, and my three children (ages 8, 5, & 2) are his whole world, I will always be his baby girl.

My dad, Jesse A. Cox, was born October 28^th, 1948. While growing up, Dad and his siblings didn’t have much. However, with the love and care my grandparents showed them, they knew no different. After high school, Dad attended junior college, enlisted in the Army Reserve and became a Green Beret. He went on to serve active duty, jumping out of perfectly good planes while taking up body building. To this day, fitness is still important to Dad. After the military he worked at Morton Plant Hospital in Clearwater, FL as an assistant to an orthopedic surgeon. My favorite story from that time revolves around a candy striper that the nurses introduced him to. That spunky, adorable brunette was none other than my mom, or as Dad calls her, Precious!

November 13th, 1976 my dad’s life took an unexpected turn when he was involved in a horrific accident. While mowing the lawn on a friend’s property, a tree collapsed on him and crushed his spine. He endured major back surgery and needed rods and a body cast to support his recovery. Not knowing if he would ever fully recover or even be able to walk again, his perspective on life and his future quickly became clear. In 1978, after seven years of dating, he married the girl of his dreams, Debra Russo. Soon after saying “I do” this duo became a trio. In December of 1979 I was born, followed by my two baby brothers, Garret in 1983 and Clay in 1985, completing the Cox family of 5.

Dad always stressed the importance of education, hard work, and perseverance to follow our goals and dreams. The same day our family celebrated my high school senior prom, we celebrated my dad’s graduation from Shorter College with a bachelor’s degree in business. He showed us that no matter our age, we should never stop learning and growing.  My brothers and I have cultivated our careers with these lessons in mind. Garrett is now a member of the football coaching staff for the University of Tennessee. Clay pursued a career in the same field as his dad and recently launched his own distribution company, Pioneer Machine Sales. Similar to my dad, I work in sales and corporate procurement contracts, while working alongside my husband, Nick, to run our Atlanta based gyms/business, BTB Fitness.

Throughout his 35-year career in the machine and tool industry, Dad led by example. His positivity is contagious, his advice heartfelt, and he has always worked with the highest professional and personal values. He has earned the respect and admiration of his colleagues, many of whom he calls friends. As much as he loved his career, he could not have been more excited to announce his retirement one day after his 70^th birthday. He looked forward to spending more time with his family. This was a time for JJ (as my kids affectionately call him), to travel, to fish, to go boating, to spend more time with his grandkids, and to share his golden years with the people he loves. My parents raised their kids, lovingly and selflessly taken care of their four aging parents, and they even shared their home with two parents for twelve years, becoming empty nesters only recently.

I cherish watching the love and bonds between my dad and my kids deepen. When each of them started to talk, Dad would asked them “Who loves you?”. The first answer out of their mouths (with a little prodding) was… JJ! Now it doesn’t matter who asks them that question, they always say JJ first. He has taught them how to fish and how to ride bikes. The girls share his love for Hallmark movies, dancing, fishing, walks/working out, dominoes, oatmeal raisin cookies, reading, and they love convincing him to watch their favorite Disney movies. He has taught Guy, my son, to flex his muscles and throw a ball. His love for them is beautiful, pure, and just one more side of my dad I hold dear.

Never did our family anticipate that just nine months after retirement, our dad would receive a devasting diagnosis. In early 2019, Dad noticed changes with the grip in his right hand. His workouts seemed different, and he experienced some loss of strength. Initially we thought these changes were symptoms of Dupuytren’s contracture mixed with nerve damage and arthritis from his back injury, but something still wasn’t right. He noticed that his right bicep was no longer the same size as his left.  His muscle mass had deteriorated substantially.

Soon after a fishing trip in May of 2019, my dad visited his primary care physician hoping to get a referral to a hand specialist. Instead his physician referred him to a neurologist, who he saw less than 4 weeks later. Never will I forget the call I received from my mom after his appointment. I was sitting at my kitchen counter and my first thought after she shared my dad’s diagnosis was that his neurologist had to be wrong! We needed to get a second opinion as soon as possible. That second opinion and subsequent tests confirmed that Dad indeed had ALS.

So here we are. We have embarked on our new journey. We are coming to terms with our new reality. Our family came up with a plan to fight the disease and to do what our family does best – support each other, lift each other up, and be the rock for our dad in the same way he has always been for us. We researched the disease extensively and immersed ourselves in all we need to know in order to be prepared to face the future with ALS as a part of our lives.

We have all experienced so many different emotions. I’ll admit this includes a bit of denial. At first my dad had the mind-set that his diagnosis was a death sentence and honestly, who could blame him? However, there were many comforting phone calls between our family and friends, and a lot of praying. One of those calls was from a dear friend who gave him inspiration, advice, and assured him he should continue to enjoy life while living with ALS. A few days later Dad shared with my mom that he was thankful for their life together and thankful knowing that their future still holds great things. He made the decision to be proactive and to fight the disease. He will not let ALS take his spirit. He will continue to work out, walk, keep a healthy diet, work to keep his weight on, enjoy life, and pray his body keeps up with his drive. It was around this time that we took the fortunate step of calling a friend we met several years ago who has since become involved in this field. This is when we first learned about Augie’s Quest.

Dad, now almost 72 years young, has not quit. He never backs down from a challenge, and it’s no different with his ALS diagnosis. He met with the top three ALS doctors in the country and he continues to read research and fight this disease. Despite it all, the disease has progressed quicker than we hoped it would and Dad’s daily life is becoming more challenging. His body is slowing down, eating is tough, he continues to lose muscle mass and swallowing is a task. He can no longer fish or drive, and he is slowly losing his independence. Dad was naturally doing all these things with ease at this time last year, and now he is humbly asking for help. We are especially fortunate to have my mom as our matriarch, not only as she continues to support my dad during every step of this journey, but also because she was the lead Speech Pathologist for Gwinnett County’s (GA) Preschool programs over the past 20 years, experience that has and will continue to benefit my family and the community.

My parents witnessed my grandparents collectively endure the need for a feeding tube, the need for oxygen, a massive stroke, and being wheelchair bound. We couldn’t have imagined that Dad would experience a comparably painful journey. We pray daily that we are one day closer to a cure, a step that is imperative to the ALS community. The families we’ve met have shared their stories, beautiful and yet heartbreaking; many have lost loved ones to ALS. Many have family members who are struggling with the disease, like my dad, but still have so much hope and life left to live.

We must fast track treatments, accelerate the platform trials, and use our voices to advocate for our loved ones because a cure is needed, and it is needed now! Spread the word, keep our families in your prayers and please, donate to Augie’s Quest. Help them continue the crucial work they are doing in pursuit of a cure for ALS.  My dad, like all ALS patients, deserves a better quality of life. He deserves to live pain free, not need to rely on medical devices to perform the most basic of daily activities.

During my childhood my parents were united, truly a dynamic duo. Although things weren’t always easy, they made it look like they were. Throughout their 41 years of marriage, they exemplified the generosity, goodness, love, faith, and strength that binds a family together. My husband and I work hard to pass on these values to our kids. This Father’s Day is another day during which our family will sit in awe of Dad, knowing just how lucky we are to be together and how lucky my kids are to have their JJ. He is simply the best father and grandfather we could have asked for.

Sugarland is another country music duo my dad and I love. There is a special Sugarland song I proudly sing to him when we drive together. I’ll never stop singing to you, Dad. We love you to the moon and back. You’ve got this!

Love your baby girl,

Lindsay

Six years ago, our family boarded a high speed train and we were transported to a destination we did not choose.   Our son Matt had just turned 30 and he was diagnosed with ALS, the “mother-of-all terminal illnesses”.   We were unprepared for this trip.  We had no itinerary, no luggage, no roadmaps, no idea where or how long we would stay at “Destination ALS”.   This relentless ALS train never misses it’s schedule.  It arrives at the same destination every day.  When the doors open, on average, 16 -20 U.S.  families get off the train, totally unprepared for what lies ahead.

Over the years I’ve learned a lot about the disease and about the people living alongside us in the ALS Community.   We are all scrambling, digging deep into our “baggage”, to find the tools to help navigate a complex and scary landscape while we focus on caring for our loved ones living with ALS, surrounding them with love, care, and making joyful memories with family and friends.

Traveling this journey with our family are some extraordinary people.

• People who are managing, working for and or supporting organizations/labs dedicated finding a therapy for ALS (Research).
• People dedicating their lives to changing the way government(s) and sponsors(pharma) accelerate therapies for ALS. (Regulatory).
• People who are dedicating their lives to creating awareness and/or friction in the ALS community; challenging the filters through which ALS treatments, care and research have been viewed for over a century (Advocacy).
• People managing, working for and/or supporting organizations that provide care for patients and caregivers as we navigate the many challenges associated with the deterioration of our loved ones (Care)

Matt set the bar high for our family’s advocacy work and we are richer for the experience.  Our family has lobbied elected representatives, walking/rolling miles and miles under the capitol building in DC. We actively participated in “how a bill becomes a law” with the Right To Try law.  We meet with leaders at the FDA sharing our recommendations to increase the speed in which therapies are made available to the ALS community.  We’ve texted, emailed, tweeted and protested.   We’ve raised funds for care, research and advocacy by running, pub-crawling, biking,  zumba’ing, ice-dumping, polar plunging and volunteering ourselves to assist on the sidelines of many other events.  Despite our efforts, I always feel like we aren’t doing enough.

When I can, I muster up the courage to “greet the new arrivals on the ALS train when it pulls into the station”.   I check the platform first for the moms.  I’ll never forget how lost and frightened I was in those first few months after Matt’s diagnosis.   Six years in, I have some “lessons learned” to share.  I think of Fred Rogers when he said “look for the helpers. You will always find people who are helping”.   My goal is to connect the new arrivals with the helpers.  My goal is to help the helpers who are changing the trajectory of this disease.  My goal is to create a world where there is no longer a need for a train to stop at “destination ALS”.

Most New Year’s resolutions – I’m gonna lose weight, I’m gonna get in shape, I’m gonna travel more – have one theme in common. They’re about us. Us improving. Us looking better. Us upgrading the unique creature that is, well, us.

And there’s nothing wrong with that.

But this year, at a time when people seem to be on edge around the world, here’s a novel idea: make your resolution about helping somebody else.

I’ve seen the rewards this mindset can offer. As the founder and operator of an orphanage in Port Au Prince, Haiti, I oversee 52 children, children who have come from the most horrific of circumstances, being abandoned in the woods, being left to die at malnutrition clinics, losing their parents to earthquakes and hurricanes.

From the moment we take them into our orphanage, there is no thought about what they can do for us. Only what we can do for them. This thought process, month after month, year after year, eventually becomes permanent. And I find, each time I go to Haiti – which is every four weeks – that I not only slip into this mindset easily, but that I feel best about myself when I do.

My old college professor Morrie Schwartz – the “Morrie” of the book “Tuesdays With Morrie” – once said to me “giving is living.” He told me this while dying from ALS, Lou Gehrig’s disease. I was floored when he said it, because, I thought, why would a dying man say “giving” was the thing that made him feel most alive?

But it was. “Taking” held no interest for Morrie. His life force was amplified most when he was able to help someone through a problem, comfort someone in a time of need, offer a word of wisdom to a confused former student.

Giving is living. I’ve been told that some of you have read my new book “Finding Chika”, which details the story of a 5 year-old Haitian orphan whom my wife and I took in after the child was diagnosed with an incurable illness – and who, in two short years, through her humor, courage and very loud singing, made us a family in a way we never imagined.

It was the greatest example of the giving/living paradigm. Every day little Chika needed something from us. And every day, we felt so alive in helping to provide it.

It changed my approach to resolutions. Oh, sure, I’ll still want to lose weight, and get in better shape. But, truth be told, those are desires year round. Setting a new goal for the new year can be so rewarding if we start with saying “This year, I want to help…” There are so many places and

Mary Beth Angione and her sister, Kathleen Munchow, featured here in San Diego a few hours before the 2019 BASH.

A note from Augie and Lynne:

Last month, Jenny Craig hosted its annual fundraiser for Augie’s Quest, engaging its team members country wide in rallying around a cause that really hits home for this company. And, they just doubled their goal – donating more than $200,000 for our shared cause! We are so thankful for their passion, support and efforts each year in our quest.

It’s an incredible testament to Jenny Craig’s commitment to ending ALS. Their reasons are personal, as too many of their own employees have faced this disease. Lauren Wittenburg was a top Jenny Craig executive who lost her battle in 2013 and was the original inspiration and connection to Augie’s Quest. And now, two sisters, each leaders in the Jenny Craig family are both now battling this disease. This month we’ll hear from Mary Beth Angione in her own words about their personal fight with ALS – and her sister, Kathleen’s, too.

As we head into another holiday season with friends and family, please take a moment and learn about Mary Beth and Kathleen’s story – these are two incredible women you must hear from. Lynne and I met them last year at our BASH event in San Diego, when Kathleen had been diagnosed; and Mary Beth didn’t yet know she would soon be, too. They are the reason we’re in this fight and are so deserving of our support, love and absolute commitment to finding a cure as fast as we possibly can. Here is the letter she wrote to the employees of Jenny Craig ahead of their fundraising campaign for Augie’s Quest.

—

Hi everyone!

This is Mary Beth, the Center Director for Jenny Craig at Gateway here in Austin. I have been with Jenny Craig for 8 years and have loved getting to know you and watching your transformations. I love this job so much. I love each and every one of you who walk through the door. Not many people get to say they love their job the way I do working at Jenny Craig. I have made so many connections and friendships while working here. I come away with love every day.

Many of you know that last year my sister Kathleen was diagnosed with ALS. She was formerly the manager at the Jenny Craig Center in Cedar Park, TX. We also lost our VP of Operations to ALS several years ago, so the cause is close to the heart of Jenny Craig. Every October, Jenny Craig raises money for ALS research. Because of your generosity here last October, we were able raise a lot of money for research. Kathleen and I were given the opportunity to travel to Augie’s Quest Bash in San Diego to represent Jenny Craig.

Little did I know one year later…

Many of you have noticed that I have had trouble with my speech. I have been absent from my job and from you lately. Two weeks ago today, I was diagnosed with ALS. It has been affecting my voice and ability to talk. I have also become very fatigued. If you know me, I go go go. So you know this is not me. The form of ALS I have been diagnosed with is called Bulbar. Because of this, I am no longer able to work with you all like I used to.

I will miss each and every one of you so much. I have a special place in my heart for all my Jenny peeps.

I’m gonna keep fighting and keep going. You know me, I’m not one to give up. I’m going to keep smiling and hugging and loving on people. I’ve never met a stranger and I won’t stop now.

What I want to say to you is to let the transformations continue. Keep reaching for your dreams. You can do anything you put your mind to. Don’t give up on yourselves. You got this.

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.