More About Me
I am a 37 year old marketing specialist turned Long COVID / MECFS Advocate & Equity Policy Advisor from Northern Virginia. I'm still recovering from a March 2020 mild COVID-19 infection that lead to disability. Here are more details about my journey.
I grew up in Cincinnati, Ohio. Eventually attending The Ohio State University in 2003 on a full-ride academic scholarship for a little over a year before two traumatic experiences contributed to my leaving. I began to build a graphic design company that morphed into marketing.
December 17, 2009, I got the news that my stepbrother, former, Cincinnati Bengals wide receiver, Chris Henry had passed from a car accident. At the time I hadn't even known I had step-brothers. But from the first day I met quirky, yet unapologetically black Marcus Henry and Dereck Henry we seamlessly blended as a family. Unfortunately that we met under the circumstances of Chris's death. I soon learned that Chris died with severe CTE, the first active NFL player to do so. But I had no idea what it meant to have Chronic Traumatic Encephalopathy, a progressive brain condition.
My step-mom Carolyn Glaspy became an organ donor advocate, in an effort to make as much good out of our family's loss. She was a steady figure in organ donor advocacy for several years.
August 8, 2016 my family ended up losing my sister Shari Lee to chronic illness ( renal failure) and the toll it took on her mental health. Her death and Chris's contributed to my becoming a long Covid advocate.
Before my journey as a longhauler disrupted my ability to work, I had the great fortune to work on some truly inspiring organizations. I believe in working together for the good of humanity in as many ways as possible. WebStyleGurus, the graphic design company that I cofounded several years ago has worked with celebrity and high end companies. The focus being on mostly minority owned and operated non profit organizations and events. Since its inception 6 years ago, my kpop clothing company that I founded, KPOPSEOULSHOP has been a leader in diversity and inclusion. A portion of the proceeds go to raising awareness of mental illness and helping to end world hunger. For the past several years I was happily serving in multiple capacities at my local church, Grace Community Church, with 2 of those years, as head of the Hospitality Team. Grace Community Church is well known for its efforts to help ease poverty, racism and hunger in the community, which is why it quickly became one of my favorite places to serve as a volunteer.
For the past 8 years I have been a volunteer at EPW Breast Cancer Foundation, a Maryland based charity that provides mammograms and other services to low income, minority women in the community. For the past 4 years I have worked on political campaigns with minority candidates. I have also worked as a volunteer at Rita R. Church Foundation for the past 4 years, fundraising for the Rita R. Church Community Center and bringing awareness to its services in an underserved Baltimore community. Through those efforts I received a community service award in 2017.
Due to my uniquely severe Long COVID symptoms, I have had to seek care at local emergency rooms over 30 times.
After being threatened with arrest by hospital staff for seeking medical help during an episode of dangerously low oxygen and high heart rate, I became an advocate so that others who followed could receive proper care, which led to my role in the COVID-19 Long Haulers Act, where I spoke alongside the bills sponsors Rep. Don Beyer and Rep. Jack Bergman. I have also met with Rep. Ayanna Pressley's and Senator Tim Kaine's teams as they drafted Long COVID legislation. Congressman Clyburn invited me to give my sworn testimony on Capitol Hill about my experience with medical racism and the need for resources for Long COVID at the Select Subcommittee on the Coronavirus.
TIME magazine featured me alongside other well known black chronic illness advocates; Wilhelmina Jenkins, Ashanti Daniel, and Chimére Smith. I have been featured in the Washington Post about the overt and implicit bias I have faced as a Black woman seeking life-saving healthcare for Long Covid. I have also been featured in Bloomberg News, Yahoo, Fortune, USA Today and more.
I have been a part of both Long Covid and ME/CFS projects, including planning and speaking at an extremely successful Invisible Disability panel with Massachusetts Department of Public Health. I also was a panelist at the 2021 IACFS/ME Virtual Conference. I also am a Long Covid Alliance core steering member. I also am a co leader of the first BIPOC Long Covid x ME/CFS support group. I am well known in the long COVID community for working to intervene in real time to help steer long haulers to proper care in the Emergency Room. I have recently written a digital Emergency Room Guide for longhaulers of color, to increase their access to care.
Currently, I am a Board member of SolveME and Wail of A Tail. I also am a Long Covid Alliance core steering member and on the advisory board of Consuli. I am currently working on a number of Long Covid and ME/CFS projects including the now launched BIPOC Equity Agency. I also am writing care guides for longhaulers on Hugo Health Kindred - a Long COVID community. I am also working with Long COVID researchers and I have met with NIH directors on multiple occasions. I am working on a book about long Covid for women of color.
Quite often, I also speak about my experience of trying to balance being chronically ill while raising my now 7 year old son Aiden Adinig, who became a Mensa Member at 5 years old, during the height of my decline in health from long COVID. I have been featured alongside him on major media platforms such as DailyMail. He has also been featured on 60 Second Docs and our local news and in a long COVID kids PSA. He is internationally known as a prodigy in chess and math. I continue to homeschool him when our health allows for it. I originally believed he was fully recovered from Long COVID in 2020. However now after a suspected reinfection in the end of 2021 he again struggles with Long COVID symptoms, including fluctuating heart rate, post exertion malaise, and brain fog. He was only 4 years old when he became infected.
