2021 MSU Member Needs Survey: The Results Are In!
A heartwarming thanks to all 405 members who participated in our survey. This survey was created to help us get a better understanding of your needs and to find ways we can do better. Below is a summary of the key findings and further steps MSU is taking to address these needs.
If you prefer, you can view this in PDF format.
40% IBM; 25% DM; 12% PM; 9% IMNM/NAM; 5% ASyS; 9% all other types
31% 66-75; 27% 56-65; 16% 46-55; 10% 36-45; 8% 76-85; 5% 18-35
82% White; 8% Black; 4% Hispanic; 2% Multi-Racial; 2% Prefer not to say
70% female respondents; 30% male
Over 50% used website occasionally; about 25% weekly
2/3 respondents prefer updates via emails; >50% use private FB Myositis Groups for updates
2/3 respondents use MSU website for information and support
Most preferred evening and afternoon for support sessions
3⁄4 respondents are in ET or PT time zone
Less than 1 in 5 support a daily Myositis support group
Top Myositis challenges are muscle weakness, mobility, and fatigue
Top mental health challenges are anxiety, depression, and isolation
The top challenges faced with Myositis are:
- Mental Health
- Physical Health
- Daily Living
Based on the information from this survey, we have included some actions we are taking to address your needs.
Website Update including App
We have been planning to “upgrade” our website for some time as it has become very large and sometimes difficult to navigate. This survey shows roughly 70% of participants use our website and we are dedicated to making it a better experience.
Not only will we improve the design, layout, and navigation, but we will also include a mobile app to allow for push notifications, alerts, and other updates to better inform you about new programs, notify you when we launch pop-up support sessions, and a host of other Myositis Community features.
Expanding our All-Volunteer Staff
To accomplish our next steps, recruiting and training volunteers is essential. In 2021 thus far, we have added nine (9) new volunteers. We plan to recruit another 8-12 volunteers over the next 6-12 months, with a focus in 2022 on volunteer training and building our future Myositis Community Leaders.
We are committed to improving outreach to our diverse community. To help reach patients and caregivers where they are most comfortable, we have expanded not only our Zoom sessions, but we have also created the Myositis Support Club on Clubhouse. In addition to current offerings (see below), we are planning new Zoom and Clubhouse sessions.
Clubhouse Support Rooms
In mid-2021, we launched the new Myositis Support Club on Clubhouse, a free audio-only app that you can download for mobile devices from your app store.
The Weekly Clubhouse support sessions currently offered by MSU are:
- Clubhouse Sunday evening support room, each Sunday @ 7:30p ET/ 6:30p CT / 5:30p MT/ 4:30p PT.
- Myositis Support Gets Moving, each Thursday @ 1p ET / 12p CT / 11a MT / 10a PT.
We are planning the addition of two (2) Clubhouse sessions, and we also host intermittent pop-up support sessions.
When you join as a member of the Myositis Support Club on Clubhouse, you will also have access to our Clubhouse schedule and you will be notified when new rooms open.
Zoom Support Groups Expanded
We have been hosting Zoom support groups since 2016. This year, 2021, we introduced the Women with Myositis Zoom group and Parenting with Myositis Zoom group.
The monthly Zoom support sessions currently offered by MSU are:
- Myositis Wednesday Evening Session – 1st Wednesday of the month @ 7p ET/ 6p CT / 5p MT/ 4p PT. Register
- Myositis Saturday Afternoon Session – 3rd Saturday of the month @ 3p ET / 2p CT/ 1p MT / 12p PT. Register
- Necrotizing Myopathy (IMNM) Session – last Saturday of the month @ 3p ET / 2p CT/ 1p MT / 12p PT. Register
- Inclusion Body Myositis (IBM) Session – last Friday of the month @ 5p ET/ 4p CT / 3p MT/ 2p PT. Register
Webinars: Educational and Information
We believe patient and care partner education should be easy to understand and focused on topics that empower us to advocate for ourselves and each other. Webinars are often recorded and available to watch on our website 2-3 days after the session. We include a mix of expert-led and patient-led sessions, along with workshops and special guests.
This year, as of October 2021, we have hosted the following Zoom webinars:
- Exercise in Place Supporting the Caregiver (Ep. 5 in series)
- Clinical Trials and the Presidio Study
- Understanding Dysphagia
- Communicating with Your Doctor as a Myositis Patient, Dr. Bhai (Ep. 1 in series)
- Myositis and Covid w/ Dr. Pasnoor
- Hands on PT for Myositis Patients
- Myositis Do-It-Yourself Accessibility Adaptions
- Myositis, Immunosuppressants & COVID Vaccine with Johns Hopkins Physicians
- Taking Charge of Your ILD and Myositis – Dr. Johnson, Pulmonologist
- “Oh, the Places You’ll Go” Traveling with Confidence with Johns Hopkins OT/PT Team
- The Grieving Project: Creatively Grieving our Losses Workshop w/ Lisa Sniderman
- Live with the Landman’s – Honoring the Life of Stella Clapp
- 3rd Annual Myositis Empower Walk, our signature community-building and fundraising event
- Power of Short Duration Exercise w/ Blood Flow Restrictions (Ep. 2 in series)
Clubhouse Topic-Based Rooms
In addition to our weekly Clubhouse support rooms, we also host a monthly series for Myositis and the entire rare disease community, Rare Talk with MSU. These sessions are NOT recorded since they are community-wide discussions that are often personal.
This year, as of October 2021, we have hosted the following Clubhouse Topic-Based Rooms:
- Living with Myositis, An Awareness Month Discussion hosted by This is RARE
- Rare Talk w/ MSU The Journey Begins, hosted by This is RARE
- Rare Talk w/ MSU Advocate or Hypochondriac, hosted by This is RARE
- Rare Talk w/ MSU Grieving Rare Illness, hosted by This is RARE w/ Lisa Sniderman
- Rare Talk w/ MSU Creating Through Chronic Illness and Grief, hosted by RareABILITY w/ Lisa Sniderman
We know mental health matters and is something that needs to be talked about more. Jerry Williams, President of MSU often says, “No one prepares us for the mental health ‘side-effects’ of living with a chronic, rare disease.”
The data from this survey together with an independent study by Myositis Australia shows the need and MSU, Myositis Australia, and Myositis Canada of the World Myositis Coalition (TMA, MSU, Australia, Canada, CureJM and Cure IBM) will lead an effort to identify ways to collaborate across organizations to address mental health.
Accessing our Support Options
In addition to our Zoom and Clubhouse support, we also host four (4) Facebook support groups and the Myositis Support Community on Inspire. Information regarding Zoom and Clubhouse support and Myositis-related webinars that are held throughout the year are available on the Events calendar page of our website. Members who have registered for free MSU membership also receive these via email, and we post them to our online support communities, Facebook and Inspire, and to our large public social media following.
To stay informed and get involved, register for your free MSU membership at https://UnderstandingMyositis.org/register
All webinars and support sessions can be found on the event calendar at Understandingmyositis.org (MSU) website at https://understandingmyositis.org/events/month/.
See all support options by visiting https://UnderstandingMyositis.org/support
Myositis Support and Understanding (MSU) is an all-volunteer, patient-led, virtual 501(c)3 nonprofit organization working daily to improve the lives of and empower all impacted by Myositis.