Emily Filmore is a co-founder of Myositis Support and Understanding and current board advisor. She discusses being diagnosed with juvenile dermatomyositis, her difficulty in finding treatments, and how her approach to love and community shapes what MSU is today.
Financial assistance:
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Myositis support groups:
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This is Jerry Williams and I have the honor of introducing Emily's video. So watch and meet my Myo-Bestie, Emily Filmore! If you are following us, you have likely seen Emily on video with her daughter Sage, and #MSUDog, River, for the Anti-Fundraiser winning announcements. Emily seems to be our resident emcee, and always an overall cheerleader for MSU! Maybe you have tuned in to a Facebook LIVE for the Emily and Jerry Show, but Emily and I often say that we share a brain, since we share the brain fog symptom. We connect in so many wonderful ways.
Emily came into my life at just the right time. While my memory of that period is not clear, I do remember I immediately felt connected to her, like meeting a friend you haven’t seen in a while, and I later added her as an admin of the Facebook group that started this all. We both shared a passion to do something to help ourselves and others and I remember we talked, texted, emailed - you name it, a lot, brainstorming together with Sandy Block, and other patients in the community, and putting together a mission. We would discuss ways to move forward in a true, authentic, and intentional patient-centered approach, addressing the actual needs of the community. This is the genesis of MSU, and we volunteer each day working that mission. I am forever grateful for Emily’s love and support, for all of her hard work and long volunteer days, and I appreciate our shared values, which are now a part of our organizational culture; we operate with love.
To brag a little bit about Emily, she is an Author and Artist. Her book "The Marvelous Transformation: Living Well with Autoimmune Disease” is one I have read several times over the years and each time I read it, I always come away with something new, something often helpful in my emotional journey living with a chronic autoimmune disease. She has also authored multiple parenting books.
Emily is one of the Co-Founding Directors of MSU, meaning she has been with the organization since before it was an official nonprofit organization!
Now, and in those early days, Emily has been vital in leading and organizing the community, and in crafting, and living our mission. Using her artistic and creative fancy, she has been involved in most every aspect of the organization and this allows her to express our values and commitment to the community through her creativity, whether a written article, a poem, a video, or art.
Emily has served in several roles including Secretary, Vice President, and currently an advisor to the board. She lovingly refers to the Patient Financial Assistance program as her baby. She founded MSU’s Diversity, Equity, and Inclusion (DEI) Committee with some of our other members and is working with the team to guide our actions. Reaching and effectively communicating with people in communities that are so often disenfranchised, and understanding her privilege, Emily is passionate about inclusivity.
And finally, I want to say that Emily has a heart of gold. When you meet and talk with her, you know - and feel - you are with someone you can trust.
