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IBM Patient Video Support session

August 28 @ 5:00 pm - 6:30 pm EDT

|Recurring Event (See all)

An event every month that begins at 5:00 pm on day Last of the month, repeating until December 25, 2020

One event on December 18, 2020 at 5:00 pm

Free
Inclusion body myositis patient video support, last Friday of the month at 5 PM Eastern

Starting at 5 PM Eastern time

(4 PM CT, 3 PM MT, 2 PM PT)

IBM Patients, click the button below to register to attend.

NEW: For security purposes, registration is now required for all MSU video support sessions. You only need to register once to attend all IBM sessions for the rest of 2020. You will receive an email with the details to join.

Join fellow inclusion body myositis patients for a private, real-time group video support session and share your challenges, hopes, fears, circumstances, ask questions and talk to others going through the same or similar situations, including the emotional aspects of myositis life.

Support sessions are never recorded. These are private, real-time video support sessions and not the educational sessions we provide.

This session is tailored to those diagnosed with or suspected of having sporadic inclusion body myositis (sIBM), sometimes referred to as inclusion body myositis (IBM). sIBM patients are welcome to include their spouse or care partner in these sessions.

We host this separate video support session because sIBM is very different from the other forms of myositis. sIBM is a slowly progressive and degenerative muscle disease with no effective treatment options available.

This session is held on the last Friday of each month at 5 PM Eastern Time.  Registration is required. After registration, you will receive an email with details to join. See the link to register at the top of this page.

Joining from outside the U.S.? Use this time zone converter

Policies for discussions of COVID-19

When discussing COVID-19, to keep all of our members safe and comfortable, and to protect the integrity of the conversation, we will continue to enforce the rules we put in place during our first session (see below). We will have a no-tolerance policy for these rules and thankfully have not had to use them. We will give one warning and then will ask you to leave the session if you will not comply. We are not equipped to answer the questions about science or conspiracies, and therefore must ask that they are left at the door.

What this video support session is NOT:

  • A debate about the science;
  • A political discussion;
  • A conversation about conspiracy theories;
  • Medical advice (beyond what is listed as criteria to call your doctor).

What we hope this video support session will be:

  • A safe space to voice your fears among similarly situated people who understand;
  • A place to get ideas for staying sane while practicing social distancing, isolation, or quarantine;
  • A chance to get ideas for staying safe if you must continue participating in the outside world;
  • An opportunity to see that you are not alone.

Session Privacy, Trust, and Behavior

To keep everyone feeling safe, here is a list of our general, but important, policies.

  • Anything shared in the video support group session stays there! Just as in our closed online support groups, we trust that you will follow this strict rule. No sharing of private discussions outside of the video support session.
  • When sharing, we ask you to be mindful of time.
  • We will not debate or discuss politics or religion.
  • Anything shared should be audience-appropriate. We will not tolerate foul language, hate speech, bullying, inappropriate comments or jokes, or the promotion of any outside services, products, websites, or other online links that are not related to our discussions.

The views and opinions of session Hosts, Co-hosts, and Volunteers are not that of Myositis Support and Understanding (MSU).

Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long, so join us anytime within the first hour.

2020 IBM Patient Video Support

Start time is listed in Eastern Time.

May 29, 2020 – 5:00 PM

June 26, 2020 – 5:00 PM

Jul 31, 2020 – 5:00 PM

Aug 28, 2020 – 5:00 PM

Sep 25, 2020 – 5:00 PM

Oct 30, 2020 – 5:00 PM

Nov 27, 2020 – 5:00 PM

Dec 18, 2020 – 5:00 PM (one week early due to the Christmas holiday)

Tags:

Details

Date:
August 28
Time:
5:00 pm - 6:30 pm
EDT
Cost:
Free
Event Category:
Event Tags:
, ,
Website:
https://us02web.zoom.us/meeting/register/uZIrf--spjgpbZlb1vMfwRWy5796lq7B1A

Venue

MSU Zoom Video Session
Video session using Zoom
Website:
http://Zoom.us/download

Organizer

Myositis Support and Understanding (MSU)
Email:
info@UnderstandingMyositis.org
Website:
https://UnderstandingMyositis.org

Other

Event Audience
Inclusion body myositis patients
Tags:

© 2020 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

The best way to prevent catching or spreading coronavirus is thorough hand washing, social distancing, and social isolation. Should you begin experiencing symptoms of coronavirus, which include fever, cough, and shortness of breath, please contact your doctor immediately. View COVID-19 resources and updates, and stay tuned to your state, local, and federal health agencies, along with the CDC.

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