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ALS Research

Take Me Out to the Lou Gehrig Day Ballgame

ALS Research, News
Read more
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ALS Resources

ALS Research, Blog

Are you or a loved one affected by amyotrophic lateral sclerosis (ALS)? Are you a therapist, physician, or healthcare professional who works with patients who have ALS? If so, then this article is for you. We’ve compiled a list of some of the top ALS resources to help you stay informed about the latest research, new treatments, and various types of assistance available to help individuals with ALS improve their quality of life, stay connected with family and friends, and make new friends through becoming involved with a community of ALS advocates.

This page is your new “go-to” for everything ALS. You’ll definitely want to bookmark it!

News, Research, & Clinical Trials

  • ALS Association – Research
    https://www.als.org/research-matters
  • Les Turner ALS Foundation – Clinical Trials
    https://lesturnerals.org/research-patient-center/clinical-trials-studies/
  • National Institutes of Health (NIH) – Clinical Trials
    https://www.clinicaltrials.gov/search?term=amyotrophic%20lateral%20sclerosis
  • Lois Insolia ALS Clinic
    https://lesturnerals.org/research-patient-center/lois-insolia-als-clinic/
  • Create
    https://create.rarediseasesnetwork.org/
  • ALS Therapy Development Institute
    https://www.als.net/
  • Centers for Disease Control and Prevention
    https://www.cdc.gov/als/ALSExternalResearchfundedbyRegistry.html

Organizations

  • ALS Association
    https://www.als.org/
  • Les Turner ALS Foundation
    https://lesturnerals.org/
  • NEALS – Northeast Amyotrophic Lateral Sclerosis Consortium
    https://neals.org/
  • Muscular Dystrophy Association
    https://www.mda.org/disease/amyotrophic-lateral-sclerosis
  • I Am ALS
    https://www.iamals.org/
  • Everything ALS
    https://www.everythingals.org/
  • ALS Hope Foundation
    https://www.alshf.org/

Community & Support

  • ALS Association – Support Groups
    https://www.als.org/support/support-groups
  • Les Turner ALS Foundation – Support Groups
    https://lesturnerals.org/support-services/free-als-support-groups-online/
  • ALS Association – Navigating Resources
    https://www.als.org/navigating-als/resources
  • Your ALS Guide
    https://www.youralsguide.com/support-services.html 
  • ALS Pathways
    https://www.alspathways.com/als-resources/
  • ALS Hope Foundation
    https://www.alshf.org/resources

Caregivers

  • ALS Association – Resources for Caregivers
    https://www.als.org/navigating-als/for-caregivers/caregivers-resources
  • Family Caregiver Alliance
    https://www.caregiver.org/resource/amyotrophic-lateral-sclerosis-als-caregiver-resource-guide/

ALS & the autonoME

  • “Live Life” Says Veteran with ALS
    https://accessibilityservices.com/live-life-says-veteran-with-als/
  • Financial Assistance for autonoME
    https://accessibilityservices.com/qol-grants-provide-financial-assistance/
  • ALS and Speech Loss
    https://accessibilityservices.com/als-and-speech-loss/
  • ALS and AAC
    https://accessibilityservices.com/als-and-aac/
  • ALS and Environmental Control
    https://accessibilityservices.com/als-and-environmental-control/
  • Voice Banking
    https://accessibilityservices.com/als-communication-assistive-technology/
  • autonoME and ALS
    https://accessibilityservices.com/the-autonome-and-als/
  • Veterans and ALS
    https://accessibilityservices.com/veterans-and-als/
    https://accessibilityservices.com/als-and-military-veterans/
  • ALS Assistive Technology
    https://accessibilityservices.com/veterans-and-als/
    https://accessibilityservices.com/benefits-assistive-technology-autonome/
  • Bulbar Testing
    https://accessibilityservices.com/bulbar-testing-and-als/
  • Eric’s Story
    https://accessibilityservices.com/meet-beautiful-couple/

Have you benefited from a resource that you do not see on this list? If so, we would love to add it. Please send us the link – erica.jones@accessibilityservices.com.

https://accessibilityservices.com/wp-content/uploads/2024/02/image-02-03-24-at-02.34-PM.png 1123 1123 ASI https://accessibilityservices.com/wp-content/uploads/2020/12/ASIProposedORIGINALColor-01-e1608563760310.png ASI2024-02-03 19:36:162024-02-03 19:39:24ALS Resources

Ice Bucket Challenge, more than a trend, funding the fight against ALS

ALS Research, Blog

Ice Bucket Challenge, more than a trend, funding the fight against ALS

Erica Greenfelder 10/4/2022

The Ice Bucket Challenge was bigger than social media. It helped fund a new ALS drug, AMX0035.

Remember 2014? Scattered videos on your social media feeds showing celebrities, athletes, your family and friends outside waiting with an enthusiastic, albeit nervous smile for a freezing cold shock.

They all had the same message; a pledge to donate money to the ALS Association. Then a massive bucket of ice water was poured over each of them, drenching them as they tried to shake off the frigid cold. And whether it was before or after, every video included a challenge to another friend, “Donate. Get drenched. Spread the word.”

That’s how almost every ALS Ice Bucket Challenge went — and while it might have appeared to be just another social media trend, it was so much bigger, and made a huge difference in the world of ALS research.

According to The ALS Association, $2.2 million of the money raised from the Ice Bucket Challenge went into funding the development and trial of the new drug that the Food and Drug Administration recently approved for the treatment of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.

“We thank the millions of people who donated, participated, and enabled us to invest in promising therapies like AMX0035 that will immediately help people living with ALS,” said Calaneet Balas, president and CEO of the ALS Association. “This is a victory for the entire ALS community, which came together to advocate for early approval” of the treatment.

AMX0035 is by no means a cure for the fatal neurodegenerative disease, but it does  show promising results in slowing down the effects of ALS. Balas stated that funding from the 2014 Ice Bucket Challenge has “dramatically accelerated the fight against ALS.”

The new drug, AMX0035 approved recently by the FDA is not the only one benefiting from the challenge. More than $115 million were raised from the social media chain trend, and the ALS Association has reported they are funding 130 research projects in 12 different countries, as well as 40 potential treatments that are in development.

Over the past two years, the ALS community joined together to fight for access to AMX0035 for people living with ALS. Team ASI is proud to support the community as it surges forward in its efforts to provide care and treatment for individuals living with ALS.

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Quality of Life Grants Provide Financial Assistance to Organizations and Hospitals Serving Individuals with Severe Disabilities

ALS Research, Assistive Technology Advancements, News, VA Updates

assistive technology for quadriplegics

Did you know your facility or organization could qualify for a quality of life grant to help you purchase the autonoME Hospital ECU system and/or the autonoMEgo for the patients you serve?  In fact, Accessibility Services, Inc. (ASI) has worked with two facilities who have applied for quality of life grants to help fund their autonoME ECU in hospital devices.

If you represent and organization or facility that provides assistive technology for quadriplegics and individuals with debilitating diseases such as amyotrophic lateral sclerosis (ALS) and wish to implement the autonoME Hospital ECU or portable autonoMEgo, then consider applying for a quality of life grant to help offset some of the cost. Examples of quality of life grants include those offered by the Christopher and Dana Reeves Foundation and Craig H. Neilsen Foundation.

The autonoME Hospital is the world’s first device offering both augmentative and alternative communication (AAC) and environmental control tools while seamlessly incorporating all available adaptive access methods and providing a fully integrated television experience. The autonoME Hospital features a single 22” all-in-one monitor specially designed for hospitals, spinal cord injury units and rehabilitation facilities.

ASI has been a leading provider of custom environmental control unit/speech generating device solutions for individuals with the severest of disabilities for more than three decades. If you have not considered an autonoME in the past, we encourage you to schedule a complimentary demonstration with one of our product representatives today.

https://accessibilityservices.com/wp-content/uploads/2021/05/Quality-of-Life-Grants.png 1200 1200 ASI https://accessibilityservices.com/wp-content/uploads/2020/12/ASIProposedORIGINALColor-01-e1608563760310.png ASI2021-05-12 00:58:462022-01-12 20:38:51Quality of Life Grants Provide Financial Assistance to Organizations and Hospitals Serving Individuals with Severe Disabilities

ALS and Speech Loss

ALS Research, News

ALS and Speech Loss

Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease. Approximately 10% – 15% of individuals with the disease present with speech difficulties as their primary symptom. Issues with speech often begin gradually with the ability to speak degrading as the disease progresses.

If you or a loved one has been diagnosed with ALS, it is important to consider an ALS communication device with voice banking capabilities. This allows you to “bank” your voice, tone, messages and unique expressions while you still have the ability to speak.  Your voice can then be re-created as your need to communicate through voice assistive technology becomes necessary.

Let’s take a look at some ways ALS can affect speech.

Breaks or Interruptions While Speaking

ALS can cause breaks or interruptions while speaking. These “breaks” can happen frequently, making it very difficult for others to understand.

“Nasal” Sounding

We all know what it sounds like when we have allergies or a cold. A person with ALS may sound very “nasally” even without having allergies or cold.

Slurred Speech

Slurred speech is difficult to understand and is one of the tell-tale signs of disease progression.

If you’re searching for an ALS communication device with environmental control, Accessibility Services, Inc. (ASI) has you covered.  Our signature autonoME is a custom environmental control unit (ECU) and speech generating device combined in a single, convenient package. The autonoME’s user-friendly interface and ability to operate using multiple input methods make it one of the most sought after ECU devices on the market today.  Additionally, the autonoME’s voice assistive technology features include voice banking and full augmentative and alternative communication (AAC), making it perfect for ALS communication.

If you have been diagnosed with ALS and are concerned about loss of speech, we can help. Give us a call to learn more about the autonoME today.

 

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Veterans and ALS

ALS Research, News, VA Updates

Veterans and ALS

As we have discussed in a previous article, those who have served in the military appear to be at a higher risk of developing amyotrophic lateral sclerosis (ALS).  Additional studies point to the possibility that military veterans with the ALS may live longer than the average life expectancy of someone diagnosed with the disease (long-duration ALS).  The study also found that veterans with long-duration ALS experienced onset at a younger age, tended to experience slower initial progression, and took longer to diagnose.

Read the Full Study

Accessibility Services, Inc. (ASI) was founded by Fred Thompson in 1991 with the primary mission to help veterans.  ASI has been on the forefront of developing assistive technology for quadriplegics and individuals with debilitating diseases such as ALS for nearly three decades.  Our proprietary autonoME is one of the most popular tools for quadriplegics and those with ALS because it is a combined custom environmental control unit/speech generating device.  Advanced voice assistive technology features such as voice banking and full augmentative and alternative communication (AAC) make it a much sought after ALS communication device.

Although we have expanded our reach over the years, we still take our commitment to military veterans very seriously.  Not only do we employ many veterans, but we have installed our autonoME in Veteran’s Administration (VA) spinal cord injury units and have also worked with veteran’s who qualify to receive the autonoME through their VA benefits.

If you or a loved one is a veteran who has been diagnosed with amyotrophic lateral sclerosis (ALS), be sure to talk to your local VA representative about the autonoME. Give us a call to learn more today!

https://accessibilityservices.com/wp-content/uploads/2020/08/Veterans-ALS.png 1200 1200 ASI https://accessibilityservices.com/wp-content/uploads/2020/12/ASIProposedORIGINALColor-01-e1608563760310.png ASI2020-08-25 13:39:412022-01-12 20:51:49Veterans and ALS

National Institutes of Health Rolling Out New Initiative to Further ALS Research

ALS Research, News
custom environmental control unit/ALS communication device

The National Institutes of Health announced a five-year, $25 million investment in a new program aimed at incentivizing additional research on amyotrophic lateral sclerosis (ALS).  Also known as Lou Gehrig’s disease, amyotrophic lateral sclerosis is a neurodegenerative disease that has no cure.  It affects the motor neurons in the spinal cord that control voluntary muscles, eventually paralyzing these muscles including those used for speech.

This new program promoting ALS research is especially encouraging as researchers strive to better understand and find a cure for this debilitating and devastating disease. While there is currently no cure for ALS, there are FDA-approved drugs that can help prolong the lives of those diagnosed with the disease.

Learn More About NIH ALS Initiatives

Accessibility Services, Inc (ASI) actively monitors ALS research.  We are continually evolving our custom environmental control unit/ALS communication device known as the autonoME to meet the changing and growing demands of our customers. ALS assistive technology such as the autonoME improves quality of life thanks to its environmental control and augmentative and alternative communication capabilities.  The voice assistive technology features of the autonoME are particularly impressive because they allow individuals in the early stages of disease to “bank” their voice.  When they lose their ability to speak, the autonoME allows them to communicate using their own voice and unique expressions, sayings and tones.

If you or a loved one has been diagnosed with amyotrophic lateral sclerosis, there is hope.  The same assistive technology for quadriplegics has also proven successful with helping individuals with ALS control their environment and communicate with loved ones and friends.  Give us a call to learn more about the autonoME today!

https://accessibilityservices.com/wp-content/uploads/2020/06/accessibilityservices-1200x1200-layout1593-1ffecc8.png 1200 1200 ASI https://accessibilityservices.com/wp-content/uploads/2020/12/ASIProposedORIGINALColor-01-e1608563760310.png ASI2020-06-27 12:00:072022-01-12 20:55:34National Institutes of Health Rolling Out New Initiative to Further ALS Research

ALS Assistive Technology Benefits

ALS Research, Assistive Technology Advancements, News
augmentative and alternative communication

Part One

Accessibility Services, Inc. (ASI) is continuing our series of articles on the benefits of ALS assistive technology.  We are focusing specifically on the autonoME, a proprietary environmental control unit/speech generating device that offers environmental control and voice assistive technology in one single package.  Our previous article discussed how the autonoME works as an environmental control unit  This article will cover how it can also operate as an ALS communication device.

Voice assistive technology is especially important to quadriplegics and individuals with debilitating diseases such as amyotrophic lateral sclerosis whose conditions either have or will eventually affect their ability to speak.  As we discussed in our previous article, the autonoME incorporates different input methods including touch, sip and puff, eyegaze, and head tracking so individuals with varying types and stages of disability can control the device.

In addition to its environmental control features, the autonoME is also a speech generating device with full augmentative and alternative communication capabilities which give users the ability to communicate. A key ALS communication feature of the autonoME is voice banking.  This allows users to record their own unique voice, sayings, expressions, sentences, words, etc. in their own voice while they still have the ability to speak.  Later, as their disease progresses, they can continue to communicate using their own sayings, voice and expressions vs. responding with an artificially generated voice.

Would you like to learn more about how the autonoME can assist you, your loved one or patients with environmental control and augmentative and alternative communication?  The product representatives at ASI are here to help. Give us a call today!

https://accessibilityservices.com/wp-content/uploads/2020/06/accessibilityservices-1200x1200-layout400-1ffec87.png 1200 1200 ASI https://accessibilityservices.com/wp-content/uploads/2020/12/ASIProposedORIGINALColor-01-e1608563760310.png ASI2020-06-27 11:56:102022-01-12 20:56:22ALS Assistive Technology Benefits

Amyotrophic Lateral Sclerosis and Benefits of ALS Assistive Technology

ALS Research, Assistive Technology Advancements, News
amyotrophic lateral sclerosis

Part One

Our next series of articles focuses on amyotrophic lateral sclerosis and benefits of ALS assistive technology.  We will discuss two specific areas: environmental control and voice assistive technology. Accessibility Services, Inc. (ASI) developed their signature autonoME to work as both a custom environmental control unit and speech generating device, combining both features in a single convenient package.

Environmental control is extremely important to help quadriplegics and individuals with debilitating diseases such as ALS maintain independence.  The autonoME is a custom environmental control unit/speech generating device that allows users to control their surroundings.  This type of ALS assistive technology can be used to control lights, adjust the bed, turn on fans, use a telephone to make calls and send text messages, call a nurse or caregiver and more.

Another feature of the autonoME that makes it a popular form of assistive technology for quadriplegics and individuals with ALS is the fact that it has full computing capabilities via a Windows operating system. The autonoME custom environmental control unit also has different input methods to accommodate varying levels and types of disabilities.  Input methods include:

  • Voice
  • Touch
  • Sip and Puff
  • Eyegaze
  • Head Tracking

These different types of input methods also operate the autonoME’s voice assistive technology features as well. Our next article in this series will take a closer look at ALS assistive technology.

If you, a loved one, or patient has been diagnosed with amyotrophic lateral sclerosis, then ASI can help.  The autonoME is a custom environmental control unit / ALS communication device that is convenient, easy to use and offers quadriplegics and individuals with debilitating diseases such as amyotrophic lateral sclerosis the ability to maintain independence.  Give us a call to learn more about the autonoME today!

 

 

https://accessibilityservices.com/wp-content/uploads/2020/06/accessibilityservices-1200x1200-layout16-1ffec51.png 1200 1200 ASI https://accessibilityservices.com/wp-content/uploads/2020/12/ASIProposedORIGINALColor-01-e1608563760310.png ASI2020-06-27 11:53:522022-01-12 20:57:17Amyotrophic Lateral Sclerosis and Benefits of ALS Assistive Technology

Students Working to Improve Quality of Life for Those with ALS

ALS Research, News

Students Working to Improve Quality of Life for Those with ALS

We are always encouraged and impressed when we hear stories of student researchers diligently working to help improve the lives of quadriplegics and individuals with debilitating diseases such as amyotrophic lateral sclerosis. We stumbled upon a very uplifting story out of Washington State University where a student bioengineering team has designed a mattress specifically to help those with amyotrophic lateral sclerosis get more comfortable and restful sleep.

The students call their invention the Zephyr Mattress, and it includes numerous pressure-sensitive oscillating cells designed to produce different surfaced and varied degrees of firmness.  The design is still in its testing stages, but the team soon hopes to obtain a patent for the mattress and start a company.

Accessibility Services, Inc. (ASI) knows first-hand what it is like to have an idea that helps others.  We are now considered a leader in ALS assistive technology, providing ALS communication and environmental control options for individuals with all levels of disease progression. Our signature autonoME is a custom environmental control unit and speech generating device with voice assistive technology. What makes the autonoME such a popular ALS communication device is the fact that it can be controlled using different input methods. Perhaps when an individual first begins to need voice assistive technology, they are able to use touch as the input method.  As the disease progresses, they may need to control the device using an alternate input method such as eye gaze or sip and puff. The autonoME is designed to accommodate disease progression.

If you or a loved one have been diagnosed with amyotrophic lateral sclerosis, we welcome the opportunity to talk with you.  The ALS assistive technology available can significantly improve quality of life and communication with caregivers and loved ones.  Give us a call to speak with one of our product specialist today.

https://accessibilityservices.com/wp-content/uploads/2020/05/ALS-Quality-of-Life.jpg 1200 1200 ASI https://accessibilityservices.com/wp-content/uploads/2020/12/ASIProposedORIGINALColor-01-e1608563760310.png ASI2020-05-22 19:05:092022-01-12 20:57:57Students Working to Improve Quality of Life for Those with ALS
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