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Remembering those we have lost to myositis

and those continuing to fight . . .

On September 27, 2020, Myositis Support and Understanding (MSU) held its Third Annual “A Day of Remembrance” a video event to honor and remember those we have lost with myositis.

A very special thank you to the following people for their contributions to this project: Emily Filmore, Author, Co-Founding Director of MSU and current board advisor, Lisa Sniderman, award-winning artist who just released “The Grieving Project,” and Linda Rabinowitz, a valued volunteer with MSU. We are grateful for your talents, love, and time.

This event is sponsored in part by Corbus Pharmaceuticals, who we thank for their support, and for their passion for including the patient and caregiver experience.

We created the annual “A Day of Remembrance” video event in 2018 in an effort to better remember our loved ones, following years of holding a group moment of silence. Each year we publicly memorialize those we have lost to the group of rare autoimmune muscle and multi-organ diseases, the idiopathic inflammatory myopathies (IIM), generally referred to as myositis. This event is also a call to action.
 
We highlight advocacy and awareness, and information to help others better understand the needs of the myositis community, including the need for more collaborative and innovative research, clinical trials, and partnerships.
 
This is also an urgent calling for everyone affected by myositis to Take Action and Get Involved. We can honor our loved ones by becoming advocates, activists, donors, and volunteers. There is something each of us can do and we invite you to learn more about ways you can get started.

Featured in A Day of Remembrance

“Support and Understanding”

by Emily Filmore

If ever I feel weak, your love makes me strong.
If ever I feel scared, your support makes me fierce.
If ever I need to talk, I remember you are only a click or call away.
Love isn’t perfect, it doesn’t have to be unicorns, rainbows, fairytales, and magic;
All I want is a kind word, a shoulder to lean on, a gentle hug, a high five from the heart, the knowledge that you know the path I am on.

We win together, our individual successes become group knowledge and that helps us all.
Sadly, we also lose friends together. We encounter death way too often.
We mourn. We fear. We hurt.
We are bound together by this invisible foe.
Don’t tell me everything will be okay. Tell me I can weather this storm.

…And now we know we can, because we are not alone.

#MyositisLIFE Website and Outreach

Last year during Myositis awareness month, we debuted our #MyositisLIFE website. We have used it to highlight patient, family member, and care partner stories of what it is like to live with myositis. Our hope is that by sharing the everyday realities of myositis, we can impact the knowledge and understanding of all community stakeholders and improve the lives of myositis patients. Patients share their stories of triumphs and pain. Medical stories, stories of relationships, going to school with myositis, what it’s like to be a parent while living with myositis, and what it’s like to care for a parent living with myositis. Stories about food, travel, sex! It’s all there! We invite all members to share what is important to them, because they are important to us. MSU is always growing and adapting to meet the needs of our members and we hope that they will continue to embrace this tool as a way to empower themselves to teach others about each #MyositisLIFE.

Diversity, Equity and Inclusion Committee

As part of our 5th year as a non-profit, we are taking the next steps to grow and become an even better organization. Myositis affects people from all walks of life – all genders, all races, all ages, and all nationalities, but statistically, Black women are diagnosed with myositis at higher rates than other groups and unfortunately, have higher mortality rates than any other group. This is one of the reasons a diverse group of patients worked together to create a Diversity, Equity, and Inclusion Committee this year. We want to start helping to encourage faster, easier diagnosis through educating about how myositis looks different in POC, to encourage more diverse participation in MSU’s activities, and to help ensure better outcomes for all myositis patients, especially our most vulnerable people, black women. The DEI committee hopes to use #MyositisLIFE to amplify minority voices, to teach what myositis looks like in non-white patients.

Mary Jane DeLauder Memorial Fund

Education and support, for patients and caregivers, was what Mary Jane (MJ) worked to deliver. This memorial fund, established in 2019, is used to help members with inclusion body myositis (IBM), who are engaged in our support communities and wish to attend an educational conference to increase their knowledge of the disease.

Include your loved one, in memory

“A Day of Remembrance” is usually held during Myositis Awareness Month, May of each year. If you have lost a loved one with myositis and want us to remember them publicly, please share their life with us in words and in photos and short videos.

MSU Sponsors

Learn more about Corbus Pharmaceuticals, Kezar Life Sciences, Orphazyme A/S, UCB, and CSI Pharmacy, the generous sponsors of the 2020 “A Day of Remembrance” event. Each sponsor is committed to our community and we thank them for their support.

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Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support

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