Resources

We’re still in the process of building this page, but in the meantime, we want to make the resources we currently have available to you. If you need immediate assistance locating specific resources, please don’t hesitate to reach out to us directly at team@thegoldenstem.org

Travel Resources

Travel is still possible—these checklists, tips, and equipment rentals can help make every trip with ALS more manageable.

  • We understand that some equipment may be too bulky to travel with, and in many cases, renting it can be the easier option.

    Cloud of Goods - will deliver and pick up the rental.

  • Traveling with ALS: Tips for Comfortable and Stress-Free Trips

  • This checklist is intended as a general guide and may not cover every individual’s needs. Use it as a starting point and adjust as needed.

    Access Checklist Here

Support Groups

Find support groups for people living with ALS and their families to share experiences, advice, and encouragement.

Listed By State

  • California

    ALS United Orange County
    info@alsuoc.org

    More resources are coming soon! In the meantime, if you need help finding a chapter near you, please contact us at team@thegoldenstem.org

  • More resources are coming soon! In the meantime, if you need help finding a chapter near you, please contact us at team@thegoldenstem.org

  • More resources are coming soon! In the meantime, if you need help finding a chapter near you, please contact us at team@thegoldenstem.org

  • More resources are coming soon! In the meantime, if you need help finding a chapter near you, please contact us at team@thegoldenstem.org

  • I AM ALS hosts virtual support groups twice a month for both ALS patients and their caregivers and loved ones.

Daily Living Support

Discover tools and resources—from assistive technology to home adaptations, nutrition, and speech support—to make daily life with ALS a little easier.

  • Communication devices, mobility aids, smart-home tools, and where to access them.

    Voice Banking - Team Gleason

    More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org

  • Modifications for accessibility—bathroom, ramps, lift systems.

    More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org

  • Tips for maintaining nutrition and working with speech/swallow therapists.

    More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org

Emotional & Mental Health Resources

Connect with support groups, counseling services, and real-life stories from peers who understand the ALS journey. You’re not alone.

  • Local and virtual groups for people living with ALS, caregivers, and families. Please see the Support Groups section to find a group near you. If none are listed in your area, please reach out directly to team@thegoldenstem.org so we can help connect you to a local chapter.

  • Links to grief counseling, mental health hotlines, and professional therapy resources.

    More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org

  • Personal journeys, blogs, or videos to help others feel seen and understood.

    More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org

Caregiver Resources

Caring for someone with ALS can be challenging—these resources offer guidance, tips, and support to help caregivers navigate the journey with confidence.

  • How to manage daily care, plan schedules, and handle burnout.

    More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org

  • Where to find trusted in-home support or temporary care options.

    More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org

  • Advice on power of attorney, disability benefits, and insurance coverage.

    More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org

Medical & Clinical Information

Trusted resources on ALS diagnosis, treatment options, and clinical care to support patients and families.

Research & Advocacy

Explore current research, clinical trials, and advocacy opportunities to support the ALS community and advance care.

  • ALS Association

    Muscular Dystrophy Association

    Team Gleason

    I Am ALS

    More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org

  • What to expect with EMGs, MRIs, and other diagnostic steps.

    More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org

  • FDA-approved medications (e.g., riluzole, edaravone), current clinical trials, and how to find them.

    More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org

  • Guidance on finding ALS clinics, neurologists, and multidisciplinary care teams.

    More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org

Want to contribute to our field of resources?

Email us at team@thegoldenstem.org

Helpful Checklists

These checklists are intended as a general guide and may not cover every individual’s needs. Use it as a starting point and adjust as needed.

  • Coming soon

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  • Access Checklist Here