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RARE. Talk with MSU: Grieving Rare Illness – Did you forget to grieve?

July 19, 2021 @ 7:00 pm - 9:00 pm EDT

RARE. Talk with MSU hosted by This Is RARE.

RARE. Talk with MSU: Grieving Rare Illness –
Did you forget to grieve? with Lisa Sniderman

Only on Clubhouse

Hosted by This Is Rare.

Monday, July 19, 2021, at 7:00 PM Eastern Time

On the Clubhouse mobile app, search for and follow the club “This Is Rare.”
Then, see the schedule and join the room!

Did you know you can grieve your rare disease?

Join MSU and Lisa Sniderman (award-winning artist Aoede), creator of The Grieving Project who has struggled with a rare autoimmune progressive muscle disease, dermatomyositis, for 13 years while obsessively creating to heal, for an open conversation about creating, forgetting to grieve, and what it even means to grieve a rare illness.

Listen and/or share your own experiences with grief related to your chronic illness, caring for a loved one with chronic illness, or other transformation or loss, provided in a loving, safe, and supportive space.

This event is only on Clubhouse, an audio-only social and networking app for your phone. Join and listen in, and to be a part of the discussion if you choose!

Add this to your calendar for Monday, July 19th, at 7 PM ET / 4 PM PT!

Read “I forgot to grieve” by Lisa Sniderman

In this exclusive #MyositisLIFE article, Lisa Sniderman, award-winning artist and creator of The Grieving Project shares her story, “I forgot to grieve.”

Lisa writes – I forgot to put on my own oxygen mask first before attempting to put one on those around me. Writing my memoir, even sharing my story, allowed my analytical mind to process what had happened. But processing is not the same as feeling. And my heart needed to do the same.

Read Lisa’s story, and while you are there, watch Lisa’s “Keep Shining” music video.

Read I forgot to grieve
The Grieving Project by LIsa Sniderman, Aoede, cover art

The Grieving Project

Lisa Sniderman, the creator of The Grieving Project, realized she forgot to grieve her rare illness and realized that through music, she could reach many others who may have also forgotten to grieve.

“The Grieving Project is a road map to our hearts, an invitation for you to grieve your loss, your change, your unexpected and unwanted transformation, and the inspiration and encouragement you need to awaken, express, rejuvenate, activate, connect, shine and truly thrive!” 50% of proceeds are generously donated by Lisa to MSU.

The Grieving Project

Shop RARE.

Shop the store that started it all, RARE.

Thanks to the owner of RARE., Kristine Hoestermann, for creating a Myositis Zebra design now available for print, t-shirt, sweatshirt, and Raglan. Choose MSU as your nonprofit and RARE. donates a portion of your sale to us, a part of their Giving Program.

Shop Myositis, and all RARE. apparel and items

Shop Myositis on RARE.
Myositis is RARE

A very special thank you to our host, Kristine Hoestermann, owner of RARE.

This is only possible thanks to the generosity of Kristine Hoestermann, owner of RARE., who has built and cultivated a support community of rare disease patients, “come as you are.” From our individual experiences as patients joining her Clubhouse rooms, we have found them to be a loving and supportive extended family, and we have always felt safe and supported to be our true authentic selves. We hope you will join us.

About Clubhouse

Clubhouse is an audio-only, drop-in app for networking, information, and even support. It is now available on both iOS and Android. To join the event, use the link provided to bypass the waiting area.

MSU Facebook page

Be sure to visit and “Like” our public Facebook page for special events, articles, videos, and patient and caregiver opportunities.Visit us on Facebook »

Upcoming support and education sessions

Event starts in . . .

2021/07/19 19:00:00



July 19, 2021
7:00 pm - 9:00 pm EDT
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Myositis Support and Understanding (MSU)
View Organizer Website


Suggested Audience
Open to the public

© 2024 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.

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