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MitoAction

MitoAction

Support, Education, Outreach and Advocacy for Children and Adults Living with Mitochondrial Disease

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Grief and Mito

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The only thing universal about grief is that it’s universal, something we’ll all experience at some point in our lives. It’s messy, hard, non-linear, and while it may change, grief is never ending. The complexities of being a parent, caregiver, or patient in the mitochondrialRelated to the mitochondria. disease community adds many layers that impact the grieving process. Join us as chaplain and author Becky Sansbury leads us in a discussion with MitoAction Board Member, Jessica Fein and Adam Johnson, about the different kinds of grief we experience throughout the mito journey.

About the Speaker

Adam Johnson, MEd, Eds

Adam Johnson, MEd, Eds

Adam Johnson is a mitochondrial disease patient & self-proclaimed DadVocate (a dad first & advocate second). He is a lifelong educator who lost his career after receiving a life-altering diagnosis in 2019. Feeling alone, afraid, & helpless, he sought connection with others & began advocating through social media, website, and blog. Most recently, Adam started and hosts a podcast series called Parents As Rare, part of MitoAction’s Energy In Action podcast.  He also hosts a MitoAction monthly support call for men in the mito community. His overall motivation stems from the goal to own his story while supporting others along the way, including his children, family, the rare disease community & other parents facing similar challenges.

Becky Sansbury, M.Div

Becky Sansbury, M.Div

Becky Sansbury, M.Div., specializes in crisis care for individuals and organizations. After serving as a hospice chaplain for fourteen years, she published After the Shock: Getting You Back on The Road to Resilience When Crisis Hits You Head On. Becky provides compassionate perspectives and practical tools designed to help people stabilize and move forward, even in difficult times. Both a speaker and consultant to organizations such as Ronald McDonald House Charities® and Blueprint™ Medicines, Becky also provides emotional support within the rare disease community.

Jessica Fein

Jessica Fein

Jessie is the vice president of corporate marketing and creative services for Bright Horizons, the world’s leading provider of employer-sponsored child care and work/life solutions. She is a former opinion columnist for the Sunday Boston Globe and is the author of "Moving On: How to Make the Transition from College to the Real World." Prior to working at Bright Horizons, Jessie ran her own writing business, Fein Print. Jessie is the mom of three incredible children, Jonah, Dalia, and Theo. Dalia has the mitochondrial disease MERRF Syndrome.

Upcoming Events

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May 21
7:00 pm

MitoChampions Meeting

May 22
12:00 pm - 1:00 pm

FAOD Support: Exploring the Younger Years

May 23
12:00 pm

Weekly Support Call

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Expert Series

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Last Presentation

Expert Series: Serial Casting and Toe Walking
Presented April 25, 2025

P.O. Box 310
Novi, MI 48376
(888) 648-6228
info@mitoaction.org

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