Bridge the Silence

Gina Baldwin is a licensed Speech Pathologist with over 30 years of experience in the field. She holds a Bachelor of Science degree in Speech Language Pathology and a Master of Science degree in Speech Language Pathology from Southern Illinois University at Edwardsville, IL. Strongly motivated to make a difference in people’s lives, she currently devotes the majority of her professional time to providing speech therapy services in healthcare facilities and in home health environments. We are excited to welcome her as a guest blogger to ALS Connect.

As a Speech Language Pathologist, I have experienced the joy of my patients’ successes as well as my share of frustration that I could not help them achieve more. I recognized a major gap in communication when I was providing speech therapy to a 68 year-old speech-impaired patient. She and her family became frustrated while trying to communicate using Skype. My patient tried to position her picture communication board toward the camera and pointed to pictures. Her family could not see what she was pointing to and there was silence. The picture communication board did not have speech output. I stood there and watched my patient become annoyed and I experienced it too.

Augmentative and Alternative Communication (AAC) is a solution to replace and/or assist in everyday communication situations. My patient and I discussed AAC, (also known as speech generating devices), but after many trials of different systems, we were back to square one; the picture communication board. We found that the AAC systems available did not meet her needs. They were too complicated for her to use and very expensive. In addition, she did not like the cartoon characters and stick figures that were used to depict a want, need or category.

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One type of picture communication board

 

Frustrated that there wasn’t anything currently available that was appropriate for her situation, I set out to create something myself. I designed and created APP2Speak™ (APP2Speak.com) an inexpensive, easy-to-use AAC software application for the iPad. Users can customize pages and personalize lifestyle information by using their own pictures, adding words, phrases and select text-to-speech or record their own voice.

App2Speak
App2Speak

Most people with ALS experience difficulty with speech and movement during the course of their illness. Some individuals will completely lose their ability to speak and to use their hands. The inability to speak is frustrating, emotionally devastating and one of the most challenging obstacles to manage successfully. Technology can be used to help a person with ALS to communicate so they can be an active participant in their family and community life, become more independent, and make medical decisions. These people must completely rely on another method to make all of their ideas, wants, or needs known.

Several months ago I had the privilege of meeting a gentleman who had a great sense of humor. His wife helped him set up the custom pages on APP2Speak™. They took a picture of his mustache and recorded speech output saying, “Can you help me shave?” Another custom picture was a personal mug filled with beer and recorded speech output saying, “beer me”.  Customization is a means to personalize your expression, to show your personality and to connect with family and friends. The gift of speech is worth millions of conversations.

A few weeks ago I had the pleasure of having lunch with a friend I met at the ALS walk last year. I wanted to experience her voiceless world with her! We communicated using my voice (at times) and 2 AAC systems: APP2Speak™ and Talk to Me Technologies device.

Talk to Me Technologies is a computer with Windows platform with speech output software. This AAC system allows my friend to accomplish many things, for example, email, Facebook, internet searches and communication. She also has an iPad with APP2Speak™ software application. She uses APP2Speak™ for communicating in situations when she doesn’t need to have a computer. It’s easy to use and she particularly likes the text-to- speech page. (She was the inspiration for me to add this feature).

Communication is a means to express what we know. It is integral in all facets of life, especially the enjoyment of our relationships with loved ones, our friends and in our participation in everyday activities within our home and community.

For more information on Assistive Technology and Augmentative/Alternative Communications Devices, please click here.  You can learn more about APP2Speak™ by visiting http://www.app2speak.com/index.html.

Caregiver Confidential: Diagnosis and Denial

Today is the first post in a series on ALS caregiving by guest blogger, Idelle Winer.  Idelle will be sharing her journey as an ALS caregiver and asking you to share yours as well.

Are you the caregiver of a loved one with ALS? Just as the journey of every ALS patient is unique, so are the experiences of family members and caregivers. My name is Idelle, and I would like to share my journey, beginning with how I learned that my husband Brian had ALS.

Late in 2004 Brian started to develop problems with his right hand and thumb. His earliest symptoms were that he could not tear sheets from a legal pad and he was dropping pills. Brian went to his primary care physician in May 2005 when his symptoms did not improve. Brian was then referred to a neurologist for evaluation. In July 2005 Brian underwent further testing at Washington University and was told that he may have ALS, which required follow-up to establish a definitive diagnosis.

I vividly remember the July day that Brian broke the news to me. It was late afternoon—a sunny, ordinary day really—and I was watching TV, waiting for Brian to return from neurological testing. I wasn’t particularly concerned that anything was seriously wrong and in fact thought his right thumb weakness was from an old high school football injury.

When Brian walked through the front door, he looked stunned. He calmly related that he could have ALS but would not know definitely for a while. I started to cry. How could he have such a devastating diagnosis? How and why did he get this terrible disease? How could this be happening when our daughter was starting college in the fall and at this stage of our lives?

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Brian, July 2007

Reflecting back, my first awareness of ALS was from watching The Pride of the Yankees after school as a young kid. I wasn’t particularly interested in baseball but was deeply impressed by the inspirational and courageous message of Lou Gehrig. Although I didn’t understand the first thing about ALS, Lou Gehrig’s luckiest man speech left an indelible mark on me. It seemed ironic that Brian had ALS because his favorite baseball team growing up was the Yankees, and now he shared the same disease as one of his heroes.

For the next 6 months, I read as much information as I could on ALS. The ALS Association was a wonderful resource of online information, ranging from symptoms to clinical trials and research, to caregiver resources. I was so desperate for an alternative diagnosis that I even called the St. Louis office, looking for reassurance. I constantly stared at his right arm, hand, and thumb to see if there were any visible signs of muscle wasting. After each office visit between August 2005 and February 2006, I asked Brian if the neurologist was any closer to making a definitive diagnosis. Each time Brian told me his symptoms were about the same with little change or progression, allowing me to cling to the false hope that there was another explanation for his symptoms. Despite my wishful thinking, Brian was officially diagnosed with ALS in February 2006.

How did your loved one learn of his or her diagnosis? What were the initial symptoms that brought your loved one to a physician? How did you and your loved one cope with the diagnosis? Please share your experiences in comments section and  let’s continue the conversation.

You can send your questions or post suggestions to Idelle at alsastl@alsastl.org. For more information and resources on caring for a person with ALS, please visit alsa-stl.org.

Looking Back at August

As we officially enter into September, we can’t help but look back at this month and compare it to August 2014.  This August was a busy month filled with events, not unlike past Augusts.  While our social media pages were less inundated with videos of people taking the challenge, many families are still feeling the impact of this viral sensation.  We continue to hear stories of what this means to people even three years later.  Sabrina Jones is one such person and here she reflects on where she was in August 2014 and the journey her family has been on since. 

Looking back at August 2014… One of my friends challenged me to do the Ice bucket Challenge.  I’m not sure if they’re really a friend, though, since I was about 36 weeks pregnant!  But, like a champ, I rocked the Challenge–not just once, but twice since my husband “forgot” to record the first bucket!  At that time, I had no real idea what ALS was or why it mattered.  “The Challenge” was something fun my friends challenged me to do, and I couldn’t wait to donate and challenge others!  To be honest, looking back on that time in life, it was nice having no clue of what ALS is and does.

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Screenshots from Sabrina Jones and Lester Hamlin’s Ice Bucket Challenge videos in 2014

This past September 2016, my mother, Pattie Hamlin, was diagnosed with ALS after having some symptoms for about a year.  This was a terrifying time for my family.  We were all now forced to learn and know what ALS is.

Hamlin Family

After about a month or so of living in what felt like a deep dark lonely hole, my mother decided to reach out and be an advocate for ALS.  Her first order of business was to help advocate for other ALS patients by encouraging others in our state to write to their congressman.  My mother went above and beyond and collected about 3,000 signed letters!!  She’s also helped get votes out so our Nokomis School District would win a Holiday Mannequin Challenge that got us $50,000 from GivIt that was split between ALS research and our hometown school district, Nokomis School District.  My dad, Lester Hamlin, and mother also went to Washington, DC to again advocate for ALS patients’ needs.  After that, they came home to lead about 150 family members, friends, and coworkers in the Walk to Defeat ALS in Springfield, IL.  Our amazing team, Pattie’s Posse, was able to raise and donate $39,735.  I’m sure I’ve left something out because it’s been a whirlwind!

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Pattie’s Posse at the 2017 Walk to Defeat ALS in Springfield, IL

Thanks to all the hard work of the many people who participated in the Ice Bucket Challenge and who also continue to advocate for ALS patients, a new drug is being released this month for ALS patients.  This isn’t a cure, but it’s giving us a small glimpse of light at the end of the tunnel–to someday conquer this disease!

The diagnosis of ALS isn’t something we’d ever imagined.  However, when life gave my mom lemons… she has turned around and made the best lemonade she knows how!

Growing Up With a Parent Who Has ALS: What I Learned

By Kelsey Lester

Growing up my chores included: cleaning my room, doing the dishes, putting the laundry away, and suctioning my dad’s throat cannula. The last chore isn’t typical of most kids, but my growing up wasn’t typical. My dad was diagnosed with Lou Gehrig’s disease in October 1993. I was born in May of 1995, and my dad is still kickin’ it, so my relationship with ALS has been longer than most. My childhood and teen years didn’t only include household chores that were different, but also different life lessons.

So, here is what I learned growing up in an ALS household…

I learned about how fragile life is.

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Jeff Lester and Kelsey Lester

Some of the first memories I have as a kid are of me laying on the grass, staring up at the sky, and trying to understand the concepts of life, death, and why we are on Earth. While this isn’t the typical worries of a kindergartner, these concepts are what I had to process through at a young age. I had to understand that life is a gift that needs to be cherished and shared with others. The idea that our time on Earth is fleeting and could change or end at any moment has been a focal point in how I choose to live my life. My sisters and I are all people who try to live each day to its fullest and achieve all that we can, which I know is a direct result of our understanding that life doesn’t always go as planned.

I learned about tenacity.

Tenacity, perseverance, and confidence are the attributes I have seen in my dad as he has battled ALS. Seeing these traits in him while growing up has shaped how I view the struggle of life, and to what extent I let life get me down. Life can throw curve balls at us at times, but doesn’t mean that we can’t stand back up after we’ve been hit. My life isn’t an easy walk, but I can stand tall knowing that nothing can happen where I can’t choose to persevere. My dad used to joke when I would have to give my life quote for school activities that it would be, “build a bridge and get over it,” which I did use for my high school graduation speech. My dad’s fight has shown me that each mountain has a valley, but that the trek back up the mountain is worth it. I know that life can be hard, but that in the grand scheme of things, our lives, even with ALS, are filled with blessings.

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I learned what loving another person means.

Being in an ALS household doesn’t end with my dad having ALS. Having a parent who has ALS, also means that I have a full-time caregiver as a parent. My mom has stood next to my dad through all the stages as his mobility decreased, and has taken care of him 24/7 for over twenty-two years. My parents are a testimony that love and marriage aren’t only about the milestones you want to experience with another person, but also about the sacrifices you are willing to make for another person. My parents have sacrificed everything for each other and our family, which shows since they are still married in a society that has a divorce epidemic. My parents aren’t perfect, but they have, through ALS, set a standard for what love is.

And most of all…

I learned to laugh.

My family is always laughing. I would say that my parents have more reason than most people to be angry at the world, and to live a life of negativity. Instead, my parents chose positivity. With each hard time that my family has gone through, we have been there to pick each other up, and enjoy our time together by making fun of each other and the world that we live in. While I would say the downside to this is my crude sense of humor, I know that the upside of being able to laugh anything off and truly enjoy the company of others. Nothing can stop the laughter of my family, not even ALS.

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Lisa, Jeff and Kelsey Lester

Kelsey Lester, a recent graduate of Missouri State University, served as a communications and marketing intern for our Chapter last summer, and was our Walk to Defeat ALS Facebook Live correspondent this past June. Since getting her bachelor’s degree in May, Kelsey has moved to St. Louis, traveled to Africa, and is preparing to apply to law school.

For more information on ALS, please visit www.alsa-stl.org.

Practicing Relaxation with the Body Scan

Holly Pinto is the owner and director of The Body Therapy Center and School of Massage, Ltd. In Swansea, Illinois.  She has been practicing massage and a variety of different therapies since 1989.  We are excited to have her contribute to ALS Connect as a guest blogger. 

The first time I heard the word ALS it was when my father was diagnosed when he was 78 years old. Soon after his diagnosis, we figured out that the “nerve disease” that my aunt had died of was actually ALS. And just recently, I lost my niece  from this horrific disease at just 40 years of age. This post is for you the caregiver and you the person LIVING with ALS.

Being diagnosed with a terminal illness, especially one as progressively debilitating as ALS is, can cause deep fear and anxiety and enormous amounts of stress. But there are ways to combat those emotions and diminish that stress — research shows that individuals can make a quantitative change in their mind by actively committing to a mindfulness practice. As an educator of wellness and meditation for the last 25 years, I know first-hand that lowering your stress level and getting control of your mind and thoughts can make a huge difference in your life. In fact, some mindfulness practices can help with anxiety, insomnia, and have the ability to slow your heart rate down which in turn can make you feel more relaxed.

Our autonomic nervous system – which controls your heart rate and breathing among other things – is divided into two parts: one part, the sympathetic side, is wired for fight/flight and the other, the parasympathetic, for rest and relaxation. When we are stressed our bodies don’t know the difference between fleeing from a saber-toothed tiger or the worry that we are feeling on a daily basis. It triggers the same stress response. When we  deal with stressful situations — sometimes many times a day —  physical symptoms such as insomnia, anxiety, etc. result.  The Body Scan helps to raise our parasympathetic side and lower the sympathetic side of the autonomic nervous system.

As you begin your mindfulness exercise and practice the Body Scan,  it is important to think about a short mental statement or a deep desire and repeat it before and after your practice. It could be a desire to do something different or change something in your life. It should express your commitment to keep a powerful and positive force alive. It is not something that will happen in the future; it is something you believe is happening in present moment. It is profound and heartfelt. Yogis call this “Sankalpa”.

The Body Scan (Learn your body scan by having someone read the body scan to you until you can do it yourself. Go through each step very slowly, pausing to really feel each of your body parts)

Getting Started:

Lay down in a comfortable position where you will not be interrupted for at least 20 minutes. You can do this exercise sitting up, too. Once in a comfortable position, ask yourself if you can make yourself 10 percent more comfortable and shift your body until you are the most comfortable you can be. Try to separate your limbs by keeping your legs spread apart and your arms and hands out to the side with palms up. Try not to move for at least 20 minutes. Take some nice deep breaths until you feel your body beginning to relax and settle down.

Setting your deep desire

Set your Sankalpa or deep resolve. For example, “I am safe and I am whole, I am at peace, I am already whole and already healed, I will achieve total health.”  Repeat this over and over. Your resolve or deep desire isn’t coming so much from an intellectual place as much as a deep place in your heart. One of the intentions of your Sankalpa is to change your direction of thinking on a daily basis and change your perceptions to make your life more balanced and healthy.

Feet

Once you are settled bring your awareness down to your feet. Feel your feet. Notice the way your feet make contact with the floor. Are your shoes and socks covering your feet? What do they feel like touching your skin?  Bring your awareness to the top of your feet, the bottom of your feet, the sides of your feet. Bring your awareness to your big toes, your baby toes. Notice heat, pressure. Any sensations you may feel in your body.

Ankles

Notice your ankles. The front and back of your ankles. The inside and outside of your ankles.

Calves

Up through your calves. Get a sense of your calves three-dimensionally. Sense your whole calf. Not just the front of your calf or just the back of your calf.

Knees

Bring your awareness to your knees.

Thighs

Bring your awareness to your thighs. The front of your thighs. The back of your thighs, the inside and outside of your thighs. Bring your awareness up your thighs and notice the connection of your legs into your pelvis.

Pelvis

Notice the weight of your pelvis as it makes contact with the floor, bed or mat.

Torso

A lot of things are happening in your torso: digestion, elimination, and breathing.  Your heart lives in your torso, a little left of your sternum in your chest. What do you notice? Can you feel your torso spreading out as you breathe in and then shrinking back as you breathe out? Can you notice anything about your heart? If not, that’s ok. There are no expectations. If you find yourself getting confused by any of this just lay there and breathe in and out and let everything else go.

Shoulders

Bring your attention to your shoulders, your upper arms, your forearms, your wrist and your hands.

Neck

The skin around your neck.

Face

Your face…can you sense the air moving in and out of your nostrils. Can you notice the air that is coming into your nose is cooler than the air coming back out? Notice your eyes and your eye lids that are closed. Your mouth and taste inside your mouth.

Scalp

Notice your scalp and your hair.

Ending

Notice as much as you can your whole body and the sense of what it feels like to be in your whole body. Laying there not segmented out but a whole body. Lay there enjoying the stillness. If you can notice how the stillness supports you and surrounds you. When you are ready slowly begin moving your fingers and toes and when you are ready slowly open your eyes. Good job!!!

It takes courage to live in our bodies and to listen to our hearts in a still and quiet way. Take your practice slow and this month just practice your body scan anytime you are feeling stressed or before you go to bed. Let me know what you notice and what is changing in your life as you begin to integrate relaxation exercises into your life.

Peace, Holly.

Eight Questions with Andrew Godbey, M.D.

Dr. Andrew Godbey is a Board Certified Neurologist and the Medical Director of the ALS clinic at Saint Francis Medical Center in Cape Girardeau, MO.

Can you tell us a little about yourself?

I grew up in Baltimore, MD and basically moved to the Midwest while attending Washington University for my undergraduate education.  I left for a year and a half to get a Master’s of Science in Public Health at Tulane University.  I followed this degree with Medical School at St. Louis University, neurology residency at Washington University, and neuromuscular fellowship at Washington University.  I moved to Cape Girardeau in 2010.

Why did you decide to become a neurologist?

Neurology is a discipline where you try to determine where the problem is located, or localization.  I enjoy this thought process and the neurological examination.  Neurologists still perform a thorough examination and that is basic to treating patients.

How long have you been treating people with ALS?

I have been working with ALS patients since my neuromuscular fellowship training at Washington University in 2009.

How is ALS diagnosed?

It is diagnosed based on the neurological examination in conjunction with neurophysiology testing (electromyography and nerve conduction studies).  The evaluation also entails ruling out other diseases that can mimic ALS such as autoimmune disorders and structural disease (problems with the brain or spine) which requires imaging of the central nervous system.

How is the ALS clinic at Saint Francis Medical Center different from a typical clinic?

The clinic is designed to involve multiple disciplinary evaluation-respiratory therapy, physical therapy, speech therapy, ALS coordinator, and case coordinator as well as an evaluation by a neuromuscular specialist.  Patients are evaluated all in one area so they do not have to travel to multiple visits/sites to get the comprehensive evaluation.

What are some of the exciting developments in research in ALS?

Obviously the most important developments include new treatments.  The FDA just recently approved of Edaravone (RadicavaTM) for ALS.  Also, there have been exciting developments in regards to the understanding the pathology of ALS.  The discovery of the NEK-1 gene and its role in the development of ALS.  We need to understand how one develops ALS in order to develop effective therapies for treatment.

What are the most common misconceptions about ALS?

The misconception that ALS is caused by infections. There has been no evidence that if one gets an infection such as Lyme disease, someone is going to develop ALS.  Also, ALS only affects muscle strength and motor activity.  ALS has also been associated with mild cognitive impairment in about 20-30% of patients.

What is the most rewarding thing about working with people who have ALS?

The most rewarding experience is being able to help people maintain a high quality of life as long as possible.  In the clinic, patients receive help with not only medications but more importantly they are seen by multiple therapies, which can help improve their quality of life (i.e. more comfortable wheelchair, supplementing diet, etc.).  Also, it is rewarding to not only help the patient but help their caregivers with coping strategies and with discussing concerns and questions.

The ALS Association St. Louis Regional Chapter supports four patient centered, multidisciplinary, ALS-specific clinics which provide compassionate care in a supportive, family-oriented atmosphere.  Visits typically last more than two hours, with patients and family members remaining in one room, while specialists orbit around them, consulting about ways to manage all aspects of health to ensure better quality of life. This multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit.

Do you have a question for Dr. Godbey?  Or a topic that you would like to see us cover in an upcoming blog post?  Email us at alsastl@alsastl.org — we’d love to hear from you!  And, for more information on ALS and multidisciplinary care, visit alsa-stl.org.

The ALS Ice Bucket Challenge: How It Helped and Why It Matters

Nearly three years ago, on August 4th, a peculiar news item showed up on our social media feed at The ALS Association St. Louis Regional Chapter.  Someone had posted an article from Shape Magazine that described something called an “Ice Bucket Challenge,” where people across the country were dumping buckets of water on their heads and challenging three other people to do the same thing. It seemed like a fun, interesting way to raise awareness for ALS, so we shared it to our page and asked our Facebook fans, “Have any of you heard of this?”  The rest of August became a blur of ice and water – it was incredible.

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A screenshot of our August 4, 2014 Facebook post

How it started

The ALS Ice Bucket Challenge – the largest viral social media craze the world has ever seen – was an organic movement started and carried by the community. It was not a planned fundraising or awareness campaign that The ALS Association created – it was instead initiated by people who were impacted by this fatal disease.

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The ALS Ice Bucket Challenge spread

Chris Kennedy, a golfer in Sarasota, Florida, was nominated and took the “ice water” challenge, which was, at the time, not connected with any specific charity. Kennedy then nominated a family member whose husband suffered from ALS, Anthony Senerchia, which was the first time the challenge became associated with ALS and The ALS Association.

The “ALS Ice Bucket Challenge” spread quickly on social media, linking to another person battling ALS, Pat Quinn, whose network of friends overlapped with Pete Frates, a young Boston College Baseball player and team captain, who had been diagnosed with ALS in his 20’s. Frates involvement led to participation by Boston’s athletic community, where it really went viral as professional athletes helped it to cross over into the celebrity realm.

From there – well you’re familiar with the rest – it spread across the nation and eventually went global.  By the peak of the challenge, which was somewhere near the third week of August, nearly 1.2 million videos – including those by Bill Gates, Oprah, George Bush, Jimmy Fallon, Shaquille O’Neal and others – had been posted to social media.  The whole world was talking about ALS.

How it Helped

In addition to the incredible awareness generated by the challenge, the dollars raised made a huge difference to people with ALS – through programs that eased the physical, emotional and financial burdens brought on by the disease.  It also re-energized ALS-specific research and accelerated the search for treatments and a cure.

Monies raised tripled annual research spending, leading to a greater understanding of the disease pathway and potential strategies for new therapies. Funding provided by Ice Bucket Challenge donations supported new treatment approaches in clinical trials, along with the discovery of new genes like NEK-1.

Currently, as a result of Ice Bucket Challenge funds, two antisense drugs targeting the two most common inherited causes of ALS are in or entering into clinical trials.  We’ve formed two new global partnerships – ALS ONE and NeuroLINCS, and we’re actively funding 180+ global research projects in 11 countries.

And any day now, RadicavaTM will be available for prescription use by individuals diagnosed with ALS – the first new treatment for people with the disease in more than two decades.  Produced by MT Pharma and used as a drug to treat stroke in Korea, the FDA took an unprecedented step when it did not require clinical trials of the drug to be conducted in the US, saving years in the approval process.

At The ALS Association, we’ve increased efforts to educate our legislators about the vital needs of people with ALS and potential changes in laws that affect individuals battling the disease. We allocated Ice Bucket Challenge funds to develop an FDA guidance document, which helped to navigate the regulatory pathway for approval of effective therapies. This document has been credited in helping expedite the process of FDA approval of Radicava by reducing obstacles that would limit access to effective treatments.

Learn more about the progress Ice Bucket Challenge donations have funded.

Locally, donations from the Ice Bucket Challenge had an immediate impact on people with ALS in eastern Missouri and central and southern Illinois. It enabled us to increase the amount of medical equipment, nutritional supplements, home modification and adaptive devices for people with ALS, as well as doubled the amount of respite care provided to much-deserving caregivers.

We’ve doubled financial support to our area’s only ALS Certified Treatment Center, located at Saint Louis University, and strengthened partnerships with our affiliated clinics. And, in order to better serve our nation’s heroes – who are twice as likely to be diagnosed with ALS as the general public – we are proud to be participating in a National Veterans Administration initiative, collaborating with clinicians in the St. Louis VA hospital system to establish an ALS specific clinic in our service area.

Why it Mattered

While some people labeled the challenge a flash in the pan, a gimmick, or “slacktivism,” to the ALS community, it was no joke.  Aside from the incredible awareness and the flood of donations, the unprecedented outpouring of support provided hope for many who were living with an ALS diagnosis. We heard from so many of the people we serve who told us that watching the videos made them feel like “the world was on their side, rooting them on.”

One gentleman in particular, Don Stewart, who had fought ALS for seven years, was so touched by the thousands of people posting their videos to social media that he decided to make his own video to thank everyone who had participated in the challenge.  Don, a longtime banjo player before ALS robbed him of his ability to play, needed oxygen to breathe, but decided to go without it for the time it took to express his gratitude.

 

Don died in 2016 after fighting ALS for nine years.  “He may have lost this one battle,” Don’s wife Saundra said, “but we’re still waging the war.”

What you can do

This August, we’d like people to continue talking about ALS.  We know lightning doesn’t strike twice, but we’ve seen what an outpouring (pardon the pun) of attention can bring. We’re asking for your help getting people talking again — about support for families, about the need for research, about what a difference those buckets of ice water made.

During the month of August, we’re asking you to re-post your Ice Bucket Challenge videos and photos to your social media accounts using the hashtag #TBIBC.

With your post, please consider sharing a fact or two about the incredible impact that the ALS Ice Bucket Challenge has had for people with ALS and their families.

Thank you to all of you who participated in the ALS Ice Bucket Challenge of 2014 (and in subsequent years).  You have truly changed the course of this disease forever.  We look forward to seeing your photos and videos throughout August and appreciate your keeping the conversation about ALS on the forefront.  We’re grateful for your support of people and families fighting ALS!

Learn more about ALS at www.alsa-stl.org.