A State College disability advocate whose fundraising efforts have raised hundreds of thousands of dollars has received an international honor.
Emily Steffensmeier was recently named to Diversability’s 2024 D-30 Disability Impact List.
Steffensmeier, who has lived with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia for 26 years, started Rowe’s Research Runners in 2017 to raise money for Dr. Peter Rowe’s Chronic Fatigue and Related Disorders Clinic at Johns Hopkins Children’s Hospital. What began as a walk around her State College neighborhood has grown into an annual in-person and virtual event – the Walk, Run, Roll – that has raised $350,000 since its inception.
The 2024 event will take place at 2 p.m. on Sunday, Oct. 13, at the Boalsburg Military Museum.
“I’m humbled and overwhelmed by the recognition of my efforts in the disability community. The international impact of the other disabled honorees inspires me to do more, and they are my teachers on this journey,” Steffensmeier said. “Even though I have been disabled for 26 years, for much of the time after I became chronically ill, I did not use the word disabled. Now, I recognize being disabled as an important part of my identity and am passionate about a more inclusive and accessible world.”
A State College native, Steffensmeier began experiencing a mysterious flu-like illness about one month after her graduation from Davidson College in 1998. She has now lived with ME/CFS and dysautonomia for more than 25 years, 15 of which she spent bedridden or homebound.
Steffensmeier discovered Rowe after many years of searching for someone not only skilled in treating her chronic illnesses, but committed to helping her have a better quality of life. She has now been his patient for more than two decades.
Rowe’s clinic now also supports patients with long COVID, which has many of the same symptoms as chronic fatigue syndrome.
He called Steffensmeier’s ability to bring people together for fundraising “incredibly valuable.”
“Care of patients with complex chronic conditions like ME/CFS, long COVID and dysautonomia is not lucrative, so we have to rely on private philanthropy to support our efforts,” Rowe said. “As a result of the work by Emily and her team, we have been able to contribute so much more – both in direct care of patients and in scholarly activities to identify new treatments and to educate colleagues.
“Emily and her team have also started a Facebook group that has provided a supportive, validating platform for information exchange and clinical tips for patients from our clinic. She and her group have been nothing short of exemplary partners in advancing our ability to care for more patients and generate new research findings.”
Steffensmeier started out raising money on her own for Dr. Rowe’s clinic during her birthday month, October, but wanted to make a larger impact – monetarily and in the disability community. She already had an online network through her personal blogging, in which she shares her disability experience.
At the Rowe’s Research Runners Walk, Run, Roll, participants are invited to make their way around the 1-mile route in whatever way they are able. The event will also include ice cream provided by Classic Cones, hot chocolate and hot cider provided by Cakeshop by Tati, a visit from the Alliance for Heroic Hearts and face painting by Faces and Spaces Artistry.
Registration is $20 for the in-person event and $15 to participate virtually — participants are welcome to “run” from their beds if that meets their needs.
To register, visit rowesresearchrunners.org.
Steffensmeier said her story is a familiar one to millions of people around the country who have fought to be believed, searched for care and grieved lost dreams due to dysautonomia and ME/CFS.
“The work that I do for the disability community comes from my own personal experience living with an invisible illness that is often dismissed and invalidated not only by providers, but by family and friends. Through my writing and fundraising, I’ve found a way to share my own disability experience while also raising awareness and much-needed funds for these illnesses,” she said. “Rowe’s Research Runners is my way of turning grief and loss into light and hope.”
