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Myositis Patient Video Support May 16, 2020 – 3 PM ET

May 16 @ 3:00 pm - 4:30 pm EDT

Free
COVID-19 and Myositis, Patient Video Support Session

Saturday, May 16, 2020

Starting at 3 PM Eastern time

(2 PM CT, 1 PM MT, 12 PM PT)

Patients, click the button below a few minutes prior to the start time to join with Zoom video.

 

Join with Video

You must install the free Zoom.us software to particpate in video support sessions. Details below.

About Myositis Patient Video Support sessions

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

Join fellow 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.

This session is tailored to those living with myositis including polymyositis (PM), dermatomyositis (DM), antisynthetase syndrome (AS), immune-mediated necrotizing myopathy (IMNM), adults with and parents of children with juvenile dermatomyositis (JDM), nonspecific myositis, and overlapping myositis with other conditions such as with mixed connective tissue disease.

This session is held on the third Saturday of each month at 3 PM Eastern Time. 

Sporadic inclusion body myositis (sIBM) patients are welcome to join this session, however, we also have a separately dedicated video support session just for those living with sIBM, as it differs from the other types of myositis in many ways.

Session policies

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 will NOT be:

  • A debate about the science of COVID-19
  • 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 chance to voice your fears among similarly situated people who understand
  • A place to get ideas for staying sane while practicing social distancing
  • 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.

We believe that by following the CDC and WHO guidelines and local and state requests we as a society will weather this storm. Please join us.

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, nor will we provide medical advice.
  • 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 and Co-hosts 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.

Details to join

May 16, 2020, 3:00 PM Eastern Time 
(2 PM Central, 1 PM Mountain, 12 PM Pacific)

Join Zoom session with video
https://zoom.us/j/387730762

Meeting ID: 387 730 762

One tap mobile
+16465588656,,387730762# US (New York)
+16699006833,,387730762# US (San Jose)

Dial by your location
+1 646 558 8656 US (New York)
+1 669 900 6833 US (San Jose)

Meeting ID: 387 730 762

Find your local number: https://zoom.us/u/ady5CTmDP6

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

Video support with text chat

The technology we use for video sessions, Zoom, also includes a text chat option available to you once you join the session.

If you are not comfortable talking and you want to ask a question or share an experience, you can type it in the chat area where all participants can read and reply. We also use the chat area to share important links and resources, guidelines for the session, and other helpful information.

You can find the button to open the chat area (see picture below) in the Zoom toolbar located at the bottom of the application.

Zoom chat button

Click the Chat button in Zoom to open the chat area

Getting connected with Zoom

Zoom, the name of the software we use for all video sessions at MSU, is required to participate. The software is free.

If this is your first video session using Zoom, install the free app for your smart devices or download and install the free software for your computer at Zoom.us/download.

If you need additional help, we have Zoom help documents with more detail.See Zoom Help »

About our Support Programs

We are a patient-led, all-volunteer 501(c)(3) nonprofit organization, founded by myositis patients for myositis patients and caregivers. Our volunteer Board of Directors consists solely of myositis patients and caregivers. Our patient and caregiver volunteers, including our board members, manage all day-to-day operations. You see, we are myositis patients and caregivers or care partners just like you.

Our support programs are always our top priority. Discovering new and innovative ways to expand our support program using technology is an ongoing process. Providing convenient support options is one way we can reach more of those affected by myositis.

We will continue to ensure you have reliable, caring, empowering and educational support, and various options from which to choose.See Support Options »

MSU Facebook page

Be sure to LIKE Myositis Support and Understanding’s Public Facebook page to keep up with the latest myositis news, research, events, patient opportunities, and more. We also list events on our Facebook page.Visit us on Facebook »

Upcoming Events

Event starts in . . .

2020/05/16 15:00:00

Tags:

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
All 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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