Online ALS Resources
NEALS is dedicated to providing access to information and tools related to ALS and ALS research.
Disclaimer: NEALS shares information concerning Amyotrophic Lateral Sclerosis (ALS) as a public service, for general information purposes only. The information listed below is gathered from other public websites and is made available without evaluation or endorsement by NEALS. It may be incomplete, outdated, or irrelevant to a particular reader’s situation.
The ALS Association
Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.
ALS Finding a Cure
ALS Finding a Cure has created a series of videos to help ALS patients and their loved ones better understand the disease and the resources and support that will be needed as the disease progresses. In the following video series, you will hear from individuals living with ALS, their spouses, healthcare providers and professionals who shed light on the impact that this disease has on one’s life. This series will touch on some of the most common and relevant aspects of living with this illness, whether it be you or a loved one. It is our hope that these videos will empower you to be proactive about understanding and managing ALS.
ALS Hope Foundation
The mission of the ALS Hope Foundation is to accelerate the search for a cure for ALS. The Foundation supports care and services at the MDA/ALS Center of Hope.
ALS Information at the National Institute of Health (NIH)
Comprehensive overview of ALS provided by MedlinePlus, a service of the U.S. National Library of Medicine.
ALS United
ALS United is a national membership organization supporting those affected by Amyotrophic Lateral Sclerosis (ALS). This collaborative network of local ALS organizations provides comprehensive, personalized care at the community level while driving large-scale research initiatives. Services include medical support, emotional counseling, local care, and advocacy. ALS United emphasizes unity, local autonomy, and person-centered care, ensuring all voices in the ALS community are heard. By fostering collaboration among ALS organizations, researchers, and healthcare providers, ALS United aims to accelerate breakthroughs and improve quality of life for individuals and families affected by ALS.
ALS Untangled
Scientific effort investigating alternative and off-label ALS treatments, while bringing together patients, clinicians, and scientists via Twitter.
Answer ALS
Answer ALS is the single largest coordinated collaborative ALS research project undertaken, generating an estimated 20 trillion data-point set of comprehensive clinical, genetic, molecular & biochemical assessment of ALS from over 1000 people. The program involved over 20 institutions and 100 researchers. All data and resources generated by the program are openly shared with the global research community in line with our mission to uncover disease subgroups and ultimately end ALS.
The National ALS Registry
The National ALS Registry is a multi-faceted research platform that allows persons with ALS to be counted and join the fight against ALS. Persons with ALS can securely share with researchers their information about where did they work, live, military history, and possible environmental exposures. Participants can also join the National ALS Biorepository and donate their blood and saliva to expand research on genetics and biomarkers.
CReATe
The goal of the Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium is to advance therapeutic development for sporadic and familial forms of amyotrophic lateral sclerosis (ALS), frontotemporal dementia (FTD), primary lateral sclerosis (PLS), multisystem proteinopathy (MSP), hereditary spastic paraplegia (HSP), and progressive muscular atrophy (PMA). The CReATe consortium aims to support this goal through study of the relationship between clinical phenotype and underlying genotype, and also through the discovery and development of biomarkers.
EverythingALS
EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers.
Hope Loves Company
Hope Loves Company (HLC) is the only non-profit in the U.S. with the mission of providing educational and emotional support to children and young adults who had or have a loved one battling Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease.
I AM ALS
I AM ALS launched the first-of-its kind Navigation program designed as a single entry point for patients and their loved ones to learn about and access ALS resources. I AM ALS is a patient-centric movement revolutionizing how to fight disease. The Navigation program is a one-stop resource that eliminates an information gap within the ALS community and better connects patients and their loved ones to the groups already providing supportive care resources.
International Alliance of ALS/MND Associations
The Alliance is a global network of ALS/MND associations informed by people living with ALS and their Caregivers (PALS/CALS), that builds capability for its members and connects to external stakeholders.
Les Turner ALS Foundation
The Les Turner ALS Foundation exists to care for those affected by the disease, guide them to answers, support them and their loved ones, and provide hope through scientific research. People have to make difficult treatment decisions and handle this constant stream of challenges with daily living. Our support groups, information guides, learning series webinars and resources like the My ALS Decision ToolTM can help people manage those complex decisions and work toward the best quality of life for them and their loved ones. For further insights into ALS participation in clinical research, explore the Les Turner Foundation guide on clinical research by clicking here.
LiveLikeLou Foundation
With a singular purpose to "Leave ALS Better Than We Found It", LiveLikeLou works across North America to educate and engage ALS advocates, provide dignity, care and comfort to families living with ALS, and fund emerging scientific research to find treatments and cures. Families are encouraged to sign up for The Great LiveLikeLou Outdoor Clean-Up program here.
Muscular Dystrophy Association (MDA)
The MDA’s website contains sections on advocacy, clinical trials, support groups, research news, and more.
PatientsLikeMe
PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real-world and accelerate the discovery of new, more effective treatments.
Project A.L.S.
Homepage for Project A.L.S., an organization committed to actively recruiting researchers from many disciplines to work together in four main areas: Basic Research, Genetics, Stem Cells, and Drug Screening.
Robert Packard Center for ALS Research at Johns Hopkins
The Robert Packard Center for ALS Research at Johns Hopkins is an international scientific operation dedicated solely to curing the disease. We are unique in our approach to fighting ALS, in that we combine and facilitate scientific collaboration and ALS research with fundraising for the development of new treatments and to finding a cure.
Roon
The internet is full of misleading, confusing and unhelpful information about ALS. To combat this, Roon (roon.com) has created a free, centralized platform for people navigating ALS. Roon consists of short-form Q&A videos from ALS experts, patients and caregivers answering thousands of the top questions that come up during the ALS journey. It’s made up of content from top experts in the space (clinicians from Harvard, Columbia, Duke and more, patients/caregivers, nonprofits). Check out Roon!
VA Biorepository Brain Bank (VABBB)
The VABBB collects donated tissues from Veterans with ALS, PLS, primary bulbar palsy (PBP), or progressive muscular atrophy (PMA). These tissues are collected, processed, stored, and given to researchers for future scientific studies on ALS. Veterans without ALS, or other neurological conditions, are also eligible to participate with the VABBB, because it can help researchers learn more about the causes of ALS
YCare
YCare is an evidence-based, day-long modular training skills and support program for youth who provide care to a family member with an illness.
Your ALS Guide
Your ALS Guide is a user-friendly website for families impacted by ALS that includes trusted information, educational videos, in-depth guides, helpful resources, and more.