Online ALS Resources
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.
Helpful links on the Association website:
About Familial ALS and Genetic Testing: www.alsa.org/als-care/resources/publications-videos/factsheets/genetic-testing-for-als.html
Living with ALS Resource Guides: www.alsa.org/als-care/resources/publications-videos/resource-guides/
Muscular Dystrophy Association (MDA)
The MDA’s website contains sections on advocacy, clinical trials, support groups, research news, and more.
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.
Scientific effort investigating alternative and off-label ALS treatments, while bringing together patients, clinicians, and scientists via Twitter.
ALS Forums and Chat
An open support community for people affected by ALS/MND.
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.
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.
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.
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.
The ALS Forum
The ALS Forum is a web-based collaborative effort to accelerate and enhance ALS research by providing both veteran ALS researchers, as well as those new to the field, with comprehensive cutting edge coverage of ALS research and drug development news and ALS research resources.
Prize4Life’s mission is to accelerate the discovery of treatments and a cure for ALS by using powerful incentives to attract new people and drive innovation. Visit our website to find out how the next ALS breakthrough could be yours.
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.
NEALS Physical Therapy Committee
The committee promotes and encourages involvement of physical therapists in developing standards of care, evaluation, and assessment measures, and research both Physical Therapy specific and for clinical trials. If you have questions about strength, exercise, or assistive technology, we encourage you to contact Physical Therapists Sara Feldman (Sara.Feldman@tuhs.temple.edu), PT, DPT, ATP at Temple University or Peggy Allred (Piastl2@gmail.com), PT, DPT at Cedars-Sinai.
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.
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.
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.
The Boston Children’s Hospital ALS Augmentative Communication Program
The mission of the program is to provide comprehensive augmentative communication and assistive technology assessments, trials and training to people with ALS from the time of diagnosis through the lifespan. The program also offers training videos on particular communication strategies for people with ALS, which can be accessed here.
The ALS Association Greater New York Chapter
There are a lot of devices and strategies that can be utilized to keep communication between PALS and their caregivers clear. This resource page provides a list of products and information that may be helpful.
Communication Support for People with ALS Article
Appropriate timing of referral for augmentative and alternative communication (AAC) assessment and intervention is an important clinical decision-making issue.
Neurology Research International, Volume 2011, Article ID 714693
AAC for ALS Research Articles