Data on Wheels ~ ALS

Free Online ALSFRS-R Score Calculator – NeurologyToolKit

Cedarbaum, Jesse M., et al. “The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function.” Journal of the neurological sciences 169.1-2 (1999): 13-21.

ALS Nutrition Calculator

This calculator was developed to help ALS patients understand their nutritional needs and adapt as the disease progresses.

National Amyotrophic Lateral Sclerosis (ALS) Registry

Collects, manages, and analyzes data about persons with ALS

ALS Research Collaborative | ALS Therapy Development Institute

Help create a future free of ALS. Join the global community of people with ALS who are participating in the ARC study. Your data could help advance treatments around the world!

PROOF Study | Stanford ALS Clinic

This study aims to develop a new survey for ALS clinical trials. With this survey, we want to measure the response to new treatments. We also want to understand which symptoms matter most to you, how priorities vary among patients, and how they may change over time.

ALS Trial Navigator: Empower Your Clinical Trial Search

Explore ALS Clinical Trials with our comprehensive ALS Trial Navigator—an empowering resource providing essential information for individuals and caregivers to make informed decisions about participating in ALS clinical trials.

AMP® Amyotrophic Lateral Sclerosis

Our mission is to accelerate therapeutic and biomarker development for ALS. The Accelerating Medicines Partnership® in Amyotrophic Lateral Sclerosis (AMP® ALS) Program brings together the resources and expertise of the NIH and other stakeholders from academia, life science companies, foundations, patient-focused groups, and research nonprofits to tackle the tremendous challenges of diagnosing, understanding, and treating ALS, a progressive and ultimately fatal neurological disease.

Caregiver Education Course

The ALS Caregiver Education Course addresses the physical and emotional impacts of ALS, interventions that may benefit a person living with ALS as well as those that may be harmful, the importance of safety and wellness for the person living with ALS.

Free Caregiver Activity Log

Learn how an activity log can help! Download this free caregiver activity log to get organized, keep track of duties, and more.

Caregiver Daily Log Book: All-in-One Care Tracker for Home Nursing, Assisted Living, Dementia & Alzheimer’s Patients: Lifewell, Tessa: Amazon.com: Books

Caregiver Daily Log Book: All-in-One Care Tracker for Home Nursing, Assisted Living, Dementia & Alzheimer’s Patients [Lifewell, Tessa] on Amazon.com. *FREE* shipping on qualifying offers. Caregiver Daily Log Book: All-in-One Care Tracker for Home Nursing, Assisted Living, Dementia & Alzheimer’s Patients

ALS Focus Data Dashboard

This dashboard provides an interactive summary of ALS Focus™ participant characteristics. All aggregate-level data displayed in this dashboard are collected through self-reported responses to the ALS Focus Demographics Survey.

Answer ALS

The most pivotal initiative in the fight against ALS this century.

ALS – Patient and Caregiver tips for every day living

Lou Gehrigs Disease – ALS (Individuals, Family, and Friends)

Private group

💚 ALS Tips, Support, & Kindness 💚

ALS Family of Faith Support Group

Tobii Dynavox® Community

ALS Forums

ALS Support and Help Forum The ALS support and MND help forums are here for individuals like yourself – people impacted by ALS and MND, whether you're a caregiver, patient, friend, or family member. Our community consists of individuals working together; exchanging information, providing moral support, caregiver support and general help with ALS – together we cope with ALS, make friends, and help one another support those with ALS.

Goode Foundation

Kerry is approaching his battle with ALS like he has everything else in life, even though the battle is against something potentially terminal. “I’m placing God on my side, and I’m in it to win it.” In September 2015, Kerry established The Goode Foundation to support ALS research and those affected by the disease.

Team Gleason

No White Flags! Team Gleason helped us with voice banking. Steve did some testing on some voice technology that he has used in videos and day to day communication.

ALS Association

We participate in monthly support meetings where we share our experience with other families. Early on, the ALSA gave us some basic equipment including a wheelchair.

Live Like Lou Foundation

Leaving ALS better than we found it Supporting families affected by ALS, funding ALS research to find treatments or a cure for Lou Gehrig’s disease, and honoring Lou Gehrig’s legacy.

BridgingVoice

Ensuring No Voice is Lost to ALS We help people living with ALS (pALS) maintain their ability to meaningfully communicate with family, caregivers, and medical professionals, no matter the stage of their disease.

Welcome to the Practical Guide to ALS.

Your ALS Guide is a user-friendly website where people living with ALS, caregivers, and professionals can find educational guides, expert video clips, resources, and more…

Homepage – Practical Guide to ALS

Welcome to the Practical Guide to ALS.

ALS Accessible Technology Guide – 90 Foundation

The definitive technology guide to living with ALS. A free resource for patients and caregivers.

ALS Insurance Navigator™

At some point during the journey, many people living with ALS face difficulties getting insurance coverage for the care, drugs, and equipment they need. While frustrating, knowing what steps to take to manage insurance denials can make the process a bit easier. Here is what you need to know to navigate insurance denials and the appeal process:

Eye Health Handout – Bridging Voice

Eye health is critical for ALS clients, especially when using an eye gaze device. This one page handout can be used by practitioners to help educate pALS and cALS about the importance of eye health. QR code provides link to full eye health training.

ALS Guidance

Having ALS isn't a choice. A lot of the rest is. My advice to PALS is to live your life until you can't, and then, to die well. I do my best to help on both those counts.

Kentucky Vocational Rehabilitation

The goal of Vocational Rehabilitation, or Voc Rehab, is to help people with disabilities maintain their current job or find a career well suited for them. In my case, they provided a lot of equipment to keep me mobile such as lifts and vehicle modifications. They also helped with accessibility tools for my office. This helped me extend my ability to work and travel for work.

KATS Program

A Guide to Assistive Technology Funding in Kentucky The funding guide is designed to help state agency personnel, service providers, individuals with disabilities, and their family members to solve the funding maze of getting assistive technology in Kentucky.

Pharmacist Considerations for Treating Patients With ALS

Practical neurology

Is gabapentin used for ALS? – Resto NYC

Why Choose RADICAVA ORS® (edaravone)? | ALS Treatment & Information

Learn about RADICAVA ORS® (edaravone), an FDA-approved oral treatment for ALS. Find benefits, safety information, and resources on this treatment option.

Homepage – Brain Donor Project

Collects, manages, and analyzes data about persons with ALS

For Donors & Patients | NDRI

Donating tissues or organs for research is a selfless act and NDRI’s private donor program is an opportunity to leave a meaningful legacy.

About the National ALS Biorepository

Learn about the function of the National ALS Biorepository

David’s ALS (Amyotrophic Lateral Sclerosis) Journey & Advocacy

My Life. My Story. Still Serving. David’s ALS Journey. ALS Stories & Education. Laugh, Cry & Learn about Amyotrophic Lateral Sclerosis (ALS Disease) from a Personal View.

ElevenLabs

ElevenLabs is a technology company that specializes in AI voice generation. Through a partnership with Bridging Voice, they are making licenses for their solution available to those of with ALS. We extremely happy with Steve’s AI voice.

Next steps after an ALS diagnosis – ALS News Today

After an ALS diagnosis, take time to decompress, learn about symptoms and treatment, look into voice banking, and make an advance care plan.

Benefits of early ALS intervention and treatment | ALS News Today

Early ALS intervention with medication and therapy is critical for slowing disease progression and making it easier to manage in daily life.

Navigating your ALS treatment plan | ALS News Today

The complexity of ALS treatments require planning to navigate, but certain strategies can help you juggle the demands of living with ALS.

Benefits of a multifaceted ALS treatment strategy – ALS News Today

Approved Treatments for ALS – ALS News Today

Non-drug Treatments for ALS – ALS News Today

Physiotherapy – ALS News Today

Learn how physical therapists use physiotherapy to treat amyotrophic lateral sclerosis (ALS) patients and help them maintain their quality of life.

Occupational Therapy – ALS News Today

Occupational therapy is intended to help ALS patients maintain their independence for as long as possible as well as to improve their quality of life.

Find your ALS Clinic

There are more than 200 ALS clinics across the U.S. Use this helpful tool from ALS Geospatial Hub to find and connect with one near you.

I AM ALS support groups

I AM ALS offers weekly virtual support groups for people who are living with and impacted by ALS. Each group provides a space for people to connect with others who can relate to what they’re going through, and receive emotional support.