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    • #17548
      Richard
      Participant

      ALS – List of Websites for More Information

      Hi All.

      If you’re the type of person that can’t get enough information about ALS, especially if you have been recently diagnosed with ALS and want to learn more, I have compiled a list of websites that can be used as a reference. I’ve attempted to group the websites under categories, though since some websites overlap in the information it made placement a little difficult.

      I am not endorsing these websites and cannot attest to their accuracy. I’m simply making you aware of them for your own reference. These websites are not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding your medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read.

      Rich

      ==== ALS FACTS ====
      http://www.ninds.nih.gov/…/Amyotrophic-late… 
      ALS Fact Sheet

      iamals.org/…/frequently-asked…
      Frequently asked questions about ALS

      iamals.org/…/how-to-build-you…
      A series of checklists with questions to ask your care teams to help get you started.

      http://www.dropbox.com/…/the_ALS_book.pdf
      ALS Explained with Practical Recommendations – A comprehensive guide to ALS from a patient perspective.

      ==== SYMPTOM CHECKERS ====
      https://symptomchecker.isabelhealthcare.com/
      Isabel – The Symptom Checker doctors use and trust. Developed, refined and tested over 20 years using Artificial Intelligence technologies.

      http://www.symcat.com/
      A disease calculator that uses hundreds of thousands of patient records to estimate probability of disease. You may have heard of Watson by IBM, which illustrates a trend of computing and predictive analytics in healthcare. We strive to empower people and medical professionals by placing the state-of-the-art in computer diagnosis at their fingertips.

      https://www.everydayhealth.com/symptom-checker/
      Everyday Health symptom checker

      ==== FUNCTIONAL RATING SCALES ====
      http://www.outcomes-umassmed.org/…/alsscale.aspx
      ALS Functional Rating Scale

      https://www.mdcalc.com/revised-amyotrophic-lateral-sclerosis-functional-rating-scale-alsfrs-r#use-cases
      ALS Revised Functional Rating Scale

      med.emory.edu/…/roads.pdf
      Rasch Overall ALS Disability Scale (ROADS)

      ==== LATEST ALS NEWS ====
      http://www.ALSNewsToday.com
      ALS News Today is strictly a news and information website about the disease.

      http://www.als.net
      Latest ALS research news

      http://www.sciencedaily.com/…/amyotrophic_late…
      Your source for the latest ALS research news

      https://www.news-medical.net/?tag=/Amyotrophic-Lateral-Sclerosis-(ALS)
      Puts ALS medical and life sciences information in reach of people that can make a difference.

      https://www.answerals.org/news/
      A global project dedicated to developing and implementing a unified strategy to stop Amyotrophic Lateral Sclerosis (ALS) through an aggressively funded agenda.

      https://alscenter.wustl.edu/news/
      Washington University School of Medicine ALS clinic news

      https://lesturnerals.org/als-news-and-resources/
      Advance scientific research into the causes, treatments and prevention of ALS. Provide exceptional clinical care and support services to people living with ALS, their families and caregivers. Increase awareness and education of ALS.

      ==== FORUMS, INFORMATION, SUPPORT AND RESOURCE SHARING ====
      http://www.patientslikeme.com
      A health information-sharing website for patients. Giving patients the opportunity to share both personal stories and health data about their conditions to help uncover great ideas and new knowledge. By sharing information, you can put your disease experiences in context and find answers to the questions you have.

      http://www.iamALS.org
      Founded by ALS patient Brian Wallach and his wife, Sandra Abrevaya, I AM ALS is revolutionizing how we cure ALS by empowering and mobilizing patients, engaging with policy-makers, and offering vital resources for people impacted by ALS.

      http://www.yourALSGuide.com
      Website helps answer your questions, connect you to resources, save you money, expand your support network, and generally make life with ALS a little easier.

      https://www.youralsguide.com/resource-list.html
      ALS support and resource list

      https://www.alspathways.com/

      ALS overview, assessing function, living with ALS, caregiver support, ALS resources

      http://www.cdc.gov/…/Default.html
      National ALS Registry offers the chance to participate in research and be counted.

      ==== CLINICAL TRIALS, ALTERNATIVE TREATMENTS AND SELF HELP ====
      http://www.neals.org
      Northeast ALS Consortium (NEALS) is to rapidly translate scientific advances into clinical research and new treatments for people with Amyotrophic Lateral Sclerosis (ALS) and motor neuron disease.

      http://www.massgeneral.org/…/als/
      http://www.massgeneral.org/…/all
      The Healey Center for ALS is on a quest to discover life-saving therapies for people worldwide who are affected by amyotrophic lateral sclerosis (ALS).

      http://www.ALSUntangled.com
      Reviews alternative and off label treatments, with the goal of helping people with ALS make more informed decisions about them.

      https://iamals.org/get-help/#discover-current-and-potential-therapies-als-clinical-trials
      Clinical trial dashboard

      https://healingals.org/
      Educate people diagnosed with ALS (PALS) and families about holistic protocols that can slow, stop and even reverse ALS progression. Change Standard of Care for all ALS patients to include nutritional testing, gut, and liver function testing, and toxin testing, as well as appropriate treatment to correct these.

      draxe.com/…/lou-gehrigs-dise…
      Dr. Josh Axe, DC, DNM, CNS, is a doctor of chiropractic, certified doctor of natural medicine, and clinical nutritionist with a passion to help people eat healthily and live a healthy lifestyle

      https://clinicaltrials.gov/
      A database of privately and publicly funded clinical studies conducted around the world.

      ==== FOUNDATIONS, ORGANIZATIONS AND RESEARCH ====
      http://www.alsfoundation.org/
      The ALS Foundation’s goal is to improve the quality of life for those living with ALS and to do whatever they can to ease the physical, emotional, and financial burdens that accompany this diagnosis for the men and women in our community who are forced to battle this disease on a daily basis.

      http://www.als.org
      The ALS Association is the only national non-profit organization fighting ALS on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances the quality of life while aggressively searching for new treatments and a cure.

      webnne.alsa.org/…/PageServer
      The ALS Association National Office, located in Washington DC, and the Northern New England Chapter, located in Concord, NH, work together to accomplish our mission, “To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.” The Northern New England Chapter focuses primarily on helping local patients and families living with ALS, while the National Office focuses primarily on research and advocacy. The National Office also supports the Chapters by providing up-to-date information and materials.

      https://alsworldwide.org/
      A nonprofit organization that provides free guidance and support to thousands of people living with ALS and their loved ones in the USA and more than 150 countries via email, online resources, and phone. We seek to help people live better and longer with ALS.

      http://www.mda.org/…/amyotrophic-late…
      MDA takes a big-picture perspective on neuromuscular diseases, including amyotrophic lateral sclerosis (ALS), so we can work across conditions to find effective treatments and cures. With our collective strength, we encourage early diagnosis and action, support families in hometowns across the country, and uncover research breakthroughs to help everyone with ALS live longer, stronger lives.

      https://dataportal.answerals.org/home
      The Answer ALS data portal is designed to help you mine this wealth of data and resources, ultimately advancing the development of effective therapeutics for ALS

      http://www.alsfindingacure.org/
      The sole purpose of the ALS Finding a Cure® Initiative is funding research to find a cure

      https://www.nejm.org/search?q=amyotrophic+lateral+sclerosis&asug=amyo
      Publish the best ALS research and information at the intersection of biomedical science and clinical practice and present this information in understandable, clinically useful formats that inform health care delivery and improve patient outcomes.

      https://www.alsmndalliance.org/
      The International Alliance of ALS/MND Associations was founded to provide an international community for individual ALS/MND Associations globally. Our vision is a world free of ALS and we help members thrive by adding value to existing and future associations through curation and creation of information and by acting as a global gateway through which Alliance Members, PALS, and CALS, internal, and external stakeholders connect.

      https://www.wewillcureals.com/
      CURE ALS is dedicated to the mission of raising funds to help find a cure.

      https://teamgleason.org
      Develops and provides equipment and technology to help restore ALS people’s communication, productivity, and purpose. Provided over $10 million in adventure, technology, equipment, and care services to over 15,000 people living with ALS and countless others through advocacy, support and ultimately bringing an end to the disease.

      https://www.alshf.org/
      The ALS Hope Foundation funds local and international efforts to find the cause and cure of ALS

      https://iamals.org/latest-research/
      The latest research from I AM ALS

      ==== GOOGLE SEARCH – FINDING RECENT INFORMATION ====
      To see recent information, use the “after:” option along with the year, month, and day within your google search text. Example below:
      after:2021-01-25 ALS treatment news

    • #17649
      Anonymous
      Inactive
    • #17662

      Thanks, it’s an impressive list!

      Sometimes there are ALS related articles on ALZforum.

      There used to be a collaboration between ALZforum and Prize4Life’s ALS research forum.
      However ALS research forum disappeared in 2019.
      I kept an incomplete copy of ALS research forum on my website.

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