Step 05: Healing ALS Registry & Observational Study

47 Steps to Healing™

Focus on small steps—each one moves you forward.
Good: Do what you can today.
Better: Do a bit more over time.
Best: Expand or refine what matters most.

The information we share is for educational purposes and should not be treated as medical advice.

Summary

Healing ALS Registry

The Healing ALS Registry is open to ALL Worldwide.

We encourage ALL of those diagnosed with ALS or related disorders to join the registry.

1) Why do you want to join the Healing ALS Registry?

  • In a 45-person 2024 Pilot Study, 85% of ALS participants who joined the Registry and did the 47 Steps did better than expected, with approximately 20% reversing symptoms
  • In the 2024 Pilot Study of 45 participants, the group’s average rate of decline was roughly one-third of what historical ALS studies would predict.
  • 40% of ALS participants stabilized or gained in functionality over a 12 month period, in the 2024 ALS Pilot Study
  • The Registry will help you keep track of all of your supplements and healing protocols
  • Seeing others’ protocols will give you ideas that may work for you
  • From the Registry, you can easily print or create a PDF of everything you are doing for your records and to send to your doctors
  • Track your history for you and your doctors to analyze what is working
  • It will inspire you to stay on track and make adjustments when needed
  • It will help all those currently with ALS since the Healing ALS Medical Team and ALS researchers will share which protocols are most effective for ALS
  • The Healing ALS Medical Team and ALS researchers will be able to publish peer reviewed articles about protocols which are working which will have an impact on the entire ALS Community including neurologists

Privacy in the Healing ALS Registry

  • Your personal information will not be shared.
  • Your privacy is strictly respected.
  • Researchers will only have access to your de-identified data with all personal information stripped.
  • Only Study Administrators have access to personal information so they are able to contact you and are legally not allowed to share this information with anyone.

Each PALS volunteering one hour a month can change the lives of everyone diagnosed with ALS within 1-2 years.

  • The Registry should be filled in monthly for best results
  • It will take you approximately 1 hour per month or less to fill in the Registry
  • The first month may take longer than an hour.
  • When enough people participate, the Healing ALS Medical Team and Researchers can share interim findings immediately so those with ALS can act on that information right away.
  • These publications and releases will influence the broader ALS community, including neurologists, and help shift standards of care toward more effective treatment approaches.

Click here to join the Registry: ALSRegistry.org

2024 45-Person ALS Study Results

The 2024 45-person Observational study was over 12 months. Participants were all diagnosed with ALS.

The following pie chart shows the 32 participants with ALS who were diagnosed less than 3 years from the start of the study

For more information about the 2024 Observational Study, click here.

Ongoing 1000-person Healing ALS Observational Study (HAROS)

Why Should All U.S. Residents Diagnosed with ALS Participate in the 1000-person Healing ALS Registry Observational Study (HAROS)?

  • HAROS is a prospective study which is more scientifically valid and therefore more respected in the scientific and medical community
  • Based on the 2024 Healing ALS Pilot Study, those who participate are expected to do significantly better than the general ALS population with a significant number stabilizing or gaining functionality.
  • Those who participate in HAROS get access to the 47 Steps to Healing ALS course for free.
  • Learn approaches that have helped others slow, stabilize, or improve ALS symptoms, longevity and quality for life
  • Discover lifestyle variables that influence ALS progression
  • Feel more empowered, informed and less alone
  • Gain insight into what may be supporting your own healing
  • Contribute to research which will expand options in ALS treatments
  • Your data helps ALS research, and allows you to track your own progress over time

Join the Study – click here

Check for Understanding and Completion of Step 5:

____  I have completed the Profile Tabs 1, 2, and 3 in the Healing ALS Registry

_____ I have filled monthly check in in the Healing ALS Registry.

_____ I am aware that the monthly check-in should be completed by the end of each month, even though I have until the 5th of the following month in case of emergency.

_____ I am aware that any partially completed information will be saved so that I may return to finish at a later time.

_____ If my supplements, brands, doctors, etc. are not listed I have emailed registry@healingals.org to get them added

____ I understand that the only required item under Vital Statistics is Weight, however I will likely want to keep track of the other items for my own records.

____ After filling out the Healing ALS Registry, I am aware that I can click “Print Records” and print or save the records to a pdf.

_____ I am aware that if I am a U.S resident, my information is more valuable to the ALS community if I officially join the study, since it is a prospective study, therefore more respected in the scientific and medical community.

_____ I am aware that if I am a non-U.S. resident, my information is still valuable and can be used for a larger retrospective, worldwide observational study.

If you have checked all boxes, Congratulations! You have completed Step 4!
Healing ALS is sponsoring the most ground-breaking observational study in history. Be a part of it!

References

  • How common are ALS plateaus and reversals? Richard S Bedlack, Timothy
    Vaughan, Paul Wicks, et al. Neurology. 2016 Mar 1;86(9):808-12. doi:
    10.1212/WNL.0000000000002251. Epub 2015
    https://pubmed.ncbi.nlm.nih.gov/26658909/
  • Study of “ALS reversals”: LifeTime environmental exposures (StARLiTE)
    J Crayle, M Lutz, J Raymond, P Mehta, R Bedlack
    Amyotroph Lateral Scler Frontotemporal Degener. 2023 Feb;24(1-2):54-62. doi:
    10.1080/21678421.2022.2090846. Epub 2022 Jul 1.
    https://pubmed.ncbi.nlm.nih.gov/35775279/
  • The frequency of ALSFRS-R reversals and plateaus in patients with limb-onset
    amyotrophic lateral sclerosis: a cohort study. Nan Hu, Dongchao Shen, et al.
    Acta Neurol Belg. 2022 Dec;122(6):1567-1573. doi: 10.1007/s13760-021-01849-
    1. Epub 2022 Jan 16.
    https://pubmed.ncbi.nlm.nih.gov/35034333/
  • ALS reversals”: demographics, disease characteristics, treatments, and co-
    morbidities. Harrison D, Mehta P, van Es MA, et al. Pooled Resource Open-Access
    ALS Clinical Trials Consortium. Amyotroph Lateral Scler Frontotemporal Degener. 2018
    Nov;19(7-8):495-499. doi: 10.1080/21678421.2018.1457059. Epub 2018 Apr 2.
    PMID: 29607695 
    https://pubmed.ncbi.nlm.nih.gov/29607695/
  • https://mndresearch.blog/2020/09/30/als-reversals-do-they-exist/
    This web page has information about ALS reversals
  • Harrison D, Mehta P, van Es MA, Stommel E, Drory VE, Nefussy B, van den Berg LH, Crayle J, Bedlack R; Pooled Resource Open-Access ALS Clinical Trials Consortium. “ALS reversals”: demographics, disease characteristics, treatments, and co-morbidities. Amyotroph Lateral Scler Frontotemporal Degener. 2018 Nov;19(7-8):495-499. doi: 10.1080/21678421.2018.1457059. Epub 2018 Apr 2. PMID: 29607695.
  • Abreu MM, Hosseine-Farid M, Silverman DG. Total Reversal of ALS Confirmed by EMG Normalization, Structural Reconstitution, and Neuromuscular-Molecular Restoration Achieved Through Computerized Brain-Guided Reengineering of the 1927 Nobel Prize Fever Therapy: A Case Report. Diseases. 2025 Nov 12;13(11):371. doi: 10.3390/diseases13110371. PMID: 41294911; PMCID: PMC12651036.
  • Diana Noland, Rhett Bergeron, & Larisa Syrow. (2025). Case Study on ALS Reversal: An Integrative Medicine Approach to Sporadic Limb-Onset ALS (P12-11.018). Neurology, 104.
  • Bedlack RS, Vaughan T, Wicks P, Heywood J, Sinani E, Selsov R, Macklin EA, Schoenfeld D, Cudkowicz M, Sherman A. How common are ALS plateaus and reversals? Neurology. 2016 Mar 1;86(9):808-12. doi: 10.1212/WNL.0000000000002251. Epub 2015 Dec 9. PMID: 26658909; PMCID: PMC4793781.

The information we share is for educational purposes and should not be treated as medical advice.

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