ALS News Today Forums Forums Boosting Our Voices ALS Awareness Month ALS Awareness Month 2024 – – Our favorite ALS resources

  • ALS Awareness Month 2024 – – Our favorite ALS resources

    Posted by Dagmar on May 1, 2024 at 1:01 am

    “ALS Tips & News You Can Use”

    We know that newly diagnosed ALS patients and their families are well “aware” of ALS. Rather, they often ask for help navigating the ups and downs of living with the condition. So, for ALS Awareness Month, our forum moderators have created “ALS Tips & News You Can Use.” It’s a collection of up-to-date ALS information, resources, and tips.  Forum members are invited to comment and share their suggestions on each topic posted. Let’s help each other learn how to live with ALS.

    Our favorite ALS resources:

    So many web pages, and too much advice! It’s easy to feel overwhelmed when searching the internet to answer your questions about ALS. Everyone has a website nowadays, and not all contain current and valid information. Here are a few of our best picks. 

    What additional ALS resources can you suggest?

    1. Your ALS Guide http://www.youralsguide.com
    Improving the everyday quality of life for families impacted by ALS. Trusted information, practical tips, educational videos, expert advice, helpful resources, and more—all in one place.

    2. The ALS Association http://www.als.org (and for those outside of the U.S.) The MND Association http://www.mndassociation.org Both organizations provide global research, along with, assistance for people with ALS/MND by coordinating multidisciplinary care through certified clinical care centers and fostering government partnerships.

    3. Les Turner ALS Foundation http://www.lesturnerals.org Helping people living with ALS receive the best quality of care and access to the most promising therapies. Online support groups, educational resources, and webinars reach an international audience.  

    Dagmar replied 1 month ago 2 Members · 4 Replies
  • 4 Replies
  • Dagmar

    Member
    May 1, 2024 at 5:06 pm

    I look forward to reading about the resources our members will be sharing!

  • Dagmar

    Member
    May 7, 2024 at 12:11 pm

    I have several favorite sites:

    Your ALS Guide https://www.youralsguide.com/ Helpful articles along with short videos on ALS life topics, plus equipment recommendations.

    I Am ALS https://www.iamals.org/ Keep up with the latest efforts for ALS advocacy in government, healthcare, and communities.

  • ksutton

    Member
    May 13, 2024 at 6:43 pm

    As a person living with ALS, I wanted to share some additional resources I’ve found helpful. I was diagnosed in January 2022 by the UCSF Clinic in San Francisco and they recommended the ALS Network (formerly ALS Golden West) proudly serving California and Hawaii through a blend of both in-person and virtual services.

    The ALS Network has been the friend I never wanted but never knew I needed… They offer such a wide array of free services including equipment loans, more than 30 monthly support groups, resources for children and families, educational programs, webinars, and each person living with ALS is paired with a professional care manager. My care manager has been an unbelievable resource and guide since the start of my journey. We check-in often and have become very good friends.

    The ALS Network is also very involved with supporting advocacy and research efforts – to improve access to care along with finding better treatments and a cure for ALS. To find out more you can go to alsnetwork.org.

    • Dagmar

      Member
      May 14, 2024 at 12:12 pm

      A few years back, I had the opportunity to work with ALS Golden West. They are a great resource for ALS patients living in California nd Hawaii. Thank you for sharing your experiences with them and, for giving them a shout-out. 🙂

Log in to reply.