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.
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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.
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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
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Can’t find an ALS support group near you? We’re here to help.
Reach out and our team will research options in your area and connect you with the right resources.
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More resources are coming soon! In the meantime, if you need help finding a chapter near you, please contact us at team@thegoldenstem.org
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More resources are coming soon! In the meantime, if you need help finding a chapter near you, please contact us at team@thegoldenstem.org
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More resources are coming soon! In the meantime, if you need help finding a chapter near you, please contact us at team@thegoldenstem.org
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I AM ALS hosts virtual support groups twice a month for both ALS patients and their caregivers and loved ones.
ALS United Orange County - held on the third Wednesday of every month from 1:30-3:00pm
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.
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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
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Modifications for accessibility—bathroom, ramps, lift systems.
If you’re currently connected with an ALS United association, they often have an extensive equipment loan closet available for you to use. Not sure which ALS United association serves your area? Reach out to us — we’re happy to help connect you.
More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org
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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.
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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.
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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
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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.
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How to manage daily care, plan schedules, and handle burnout.
Blog - Caring for Someone with ALS: Managing Daily Care, Planning Schedules and Preventing Burnout
More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org
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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
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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.
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Clear, plain-language explanations of what ALS is, typical symptoms, and how it progresses.
No One Path: Understanding the Diverse Experiences of ALS Patients
More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org
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What to expect with EMGs, MRIs, and other diagnostic steps.
When the Words You Never Expected Arrive: Facing an ALS Diagnosis
More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org
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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
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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
Research & Advocacy
Explore current research, clinical trials, and advocacy opportunities to support the ALS community and advance care.
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Muscular Dystrophy Association
More resources are coming soon! In the meantime, if you need help finding information now, please contact us at team@thegoldenstem.org
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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
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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
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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.
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Coming soon
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