1) Healing ALS Conference News 2) ALS Registry deadline tomorrow 3) No Sunday Meeting

Published: Sat, 07/30/22

Healing ALS

Community Meetings 2022

Watch the video. Below: 1) Conference 2) Registry 3) Next Sunday.

Please share with other ALS families.

2022 Conference Registration now open. Book your conference tickets and hotel soon.

HealingALSConference.org

July 31 deadline to enter your July data. Everyone who signed up for the ALS Registry, see below for instructions.

Sunday August 7, 2022. 11am PT, 2pm ET, 8pm Europe. Lazarus Ember. His ALSFRS Score went from 27 to 45 in 1 year.

To all Healing ALS Registry Users:

This is a friendly reminder. Have you filled in your ALS Registry data for July 2022?

For those who have completed their July 2022 information, thank you! If you need to make changes, you have only until July 31, 2022. To modify your data go to: https://alsregistry.org/app/. See below for further instructions.

For those who have signed up, but not filled out information, the instructions are below. After midnight July 31, you will no longer be able to enter data for July.

Please note:

Step 5 Vital Statistic. Please just fill in weight. All other fields are optional.
Step 9 Supplements. Do the best you can. Email healingalsregistry@gmail.com if your supplement or brand is not listed.

Thank you!

Healing ALS Registry Team

REGISTRY INSTRUCTIONS:

Thank you for agreeing to participate!

The time you spend will benefit yourself and other PALS.

Your login is created.

A) Your login is your email.

B) If you have logged in before, your password is currently 123456. You will be prompted to change your password when you login for the first time.

C) Registry link to enter your data: alsregistry.org/app. Enter your login and password.

D) We are only asking you to fill out the Profile, and complete Step 1, Step 2 and Step 3 by 9PM Pacific Time, midnight Eastern time (US) on Thursday June 30. This should take about 15 minutes.

E) We would like you to fill out Steps 4 through 12 if possible by June 30, but since this takes a whole hour please feel free to wait until July.

F) We are requesting that you also fill out a monthly update, 15 minutes each if your supplements are already entered.

1. Once between July 15 and 25 (July 31 at the latest)

2. Once between August 15 and 25 (Aug 31 at the latest)

3. Once between September 15 and 25 (Sept 30 at the latest)

D) If you need us to add a supplement, medication, physical strategy, mental strategy, diet, etc. please email HealingALSregistry@gmail.com. Enter all of the items you can by Thursday June 30 if you have time. Otherwise July is fine.

E) If you have any other issues please email HealingALSregistry@gmail.com.

F) Here is a short video recording of the instructions on how to fill out the database.

Topic: Healing ALS Registry Q&A

Start Time: Jun 29, 2022 04:46 PM

Meeting Recording:
https://us02web.zoom.us/rec/share/mjmmi4xm-IVN19avTGL3OVKcmWuddXgCifAjjMUt0eOx66duFYzgHKpbMzX2Zjsr.IEu40rc4EXK_0ZLv

Access Passcode: Healing1!

Thank you for participating in the ground breaking project.

ALS Registry Team

PO Box 980201
Park City UT 84098
USA

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