Emily Steffensmeier

A blue gradient background with white text has “The D-30 Disability Impact List” at the top centered above “2024 Honoree” which is in between two laurels. Below, text “Emily Steffensmeier (she/her), USA” are to the left of a picture of Emily, which fills the right. Emily is a light-skinned woman with short blond hair wearing a white sweater and necklace. She is smiling with her hand on her hip. At the bottom left corner is text “Diversability, #D30DisList”.

Emily Steffensmeier

She/her/hers

Rowe's Research Runners + Chronically Emily (Disability advocate/fundraiser)

USA

Emily Steffensmeier has been disabled for over 26 years with chronic illness. From her experience of being bedbound or homebound for nearly two decades, she desired to give back to the doctor who had helped her, as well as to the entire ME/CFS community. Through her own personal blogging, she connects authentically with disabled and non-disabled people by sharing her disability experience. Through Rowe’s Research Runners, she raises funds, creates community, and supports hiring and research for the ME/CFS clinic at Johns Hopkins Children’s Hospital. The total impact for May/June 2023 was $90,000 for the clinic, and $350,000 since its inception. What began as raising money for her birthdays has become a large fundraising campaign, a social network community for patients, and volunteer opportunity for others with ME/CFS. The impact to the disability community, particularly the millions with ME/CFS and Long COVID, is that there are now more desperately needed providers and research studies, whose work ripples around the world.