Kelly Sprenkeling
I’m originally from the Netherlands, but for the past few years I’ve called Baltimore, Maryland home. I live there with my husband, Daniel and dog, Ivo. We moved here just before the pandemic began and I saw my life change dramatically after I caught COVID-19 in the first wave. Since then, I’ve faced a range of health challenges. Joining the RECOVER IVIG trial was the start of a turning point for me: my POTS symptoms improved significantly, and for the first time in years, I felt hope.
While I was busy worrying about insurance approval and how to afford ongoing treatment, a friend from my Long-COVID community, who had also seen great results with IVIG, was denied coverage by their insurance. In that moment, I realized that while I might be successful in raising funds for my own treatment, I wanted to create something bigger: a way for patients to access treatment without the constant fear of whether insurance will allow them to begin or continue treatment. The idea came to life as I gathered a group of hugely competent people around me who shared the same vision and excitement.
My background is in law and business management, and before becoming too ill to work, I led a privacy program at a multinational company. I still hope to return to that kind of work one day, but in the meantime, building this charity has given me a new sense of purpose. It allows me to use my skills while also giving me the flexibility I need to manage my conditions.
With ACT Beyond Coverage, my hope is simple: that more people can reclaim their lives and find meaning again.
Ellen Sprenkeling
I live in the Netherlands with my husband, Wytse and our son Owen. We are servants to our ginger cat Dex who absolutely matches my hair color. I’ve experienced fatigue since my mid-teens, and for as long as I can remember I’ve been navigating the challenges of living with multiple chronic conditions. Kelly and I have become very close in the last couple of years and I believe it is through her that I finally got pointed in the right direction piecing together a puzzle that would ultimately lead to my official ME/CFS diagnose in October 2025. Alongside ME/CFS, I also manage Usher syndrome, Hashimoto’s disease, Rosacea, B12 deficiency, hypermobile Ehlers–Danlos syndrome (hEDS), and MCAS. To me it is shocking that it took over 20 years to get a diagnose for a disease that links almost all of them together.
Before becoming a stay-at-home mom, I studied Industrial Design Engineering at the University of Twente and worked at the Netherlands Aerospace Centre, specializing in composite materials. It was work I genuinely enjoyed, but in 2014 my path began to shift when I moved to partial disability, and later to full disability in 2021/22 due to Usher syndrome. In 2022, COVID and my pregnancy further affected my health, bringing a lot of change into a relatively short period of time. Those experiences pushed me to rethink what contribution, fulfillment, and purpose look like in my life today. Travel has always helped me do that. On trips to Canada in particular, I realized how much I value trying new things and stepping outside my comfort zone. Whether that meant navigating unfamiliar places, saying yes to unplanned experiences or learning to trust myself in uncertain situations. I also learned that I missed working with other people, my brains and my skillset within the limits of my unpredictable health. I love my son but I never envisioned myself as a stay at home mom so when Kelly mentioned her idea for the charity I immediately jumped in and basically invited myself to play an active role. My scientific background and my creative brain will help my work within the foundation as I am mainly focussing on fundraising and making scientific data accessible. I deeply value friendship and connection and I’m excited at the prospect of meeting some amazing people through this foundation, each with their own story to tell.
My story is really just about finding my way through change. I’ve had to adjust, rethink, and start over more times than I ever expected, and each time I’ve tried to keep dancing in the rain even when the rhythm changed. With this foundation I truly believe we can make a meaningful difference for so many people. I understand how it feels when the health care system lets you down, and I hope this foundation helps people find their way back to dancing to their own tune.
Kelly Sprenkeling
I’m originally from the Netherlands, but for the past few years I’ve called Baltimore, Maryland home. I live there with my husband, Daniel and dog, Ivo. We moved here just before the pandemic began and I saw my life change dramatically after I caught COVID-19 in the first wave. Since then, I’ve faced a range of health challenges. Joining the RECOVER IVIG trial was the start of a turning point for me: my POTS symptoms improved significantly, and for the first time in years, I felt hope.
While I was busy worrying about insurance approval and how to afford ongoing treatment, a friend from my Long-COVID community, who had also seen great results with IVIG, was denied coverage by their insurance. In that moment, I realized that while I might be successful in raising funds for my own treatment, I wanted to create something bigger: a way for patients to access treatment without the constant fear of whether insurance will allow them to begin or continue treatment. The idea came to life as I gathered a group of hugely competent people around me who shared the same vision and excitement.
My background is in law and business management, and before becoming too ill to work, I led a privacy program at a multinational company. I still hope to return to that kind of work one day, but in the meantime, building this charity has given me a new sense of purpose. It allows me to use my skills while also giving me the flexibility I need to manage my conditions.
With ACT Beyond Coverage, my hope is simple: that more people can reclaim their lives and find meaning again.
Ellen Sprenkeling
I live in the Netherlands with my husband, Wytse and our son Owen. We are servants to our ginger cat Dex who absolutely matches my hair color. I’ve experienced fatigue since my mid-teens, and for as long as I can remember I’ve been navigating the challenges of living with multiple chronic conditions. Kelly and I have become very close in the last couple of years and I believe it is through her that I finally got pointed in the right direction piecing together a puzzle that would ultimately lead to my official ME/CFS diagnose in October 2025. Alongside ME/CFS, I also manage Usher syndrome, Hashimoto’s disease, Rosacea, B12 deficiency, hypermobile Ehlers–Danlos syndrome (hEDS), and MCAS. To me it is shocking that it took over 20 years to get a diagnose for a disease that links almost all of them together.
Before becoming a stay-at-home mom, I studied Industrial Design Engineering at the University of Twente and worked at the Netherlands Aerospace Centre, specializing in composite materials. It was work I genuinely enjoyed, but in 2014 my path began to shift when I moved to partial disability, and later to full disability in 2021/22 due to Usher syndrome. In 2022, COVID and my pregnancy further affected my health, bringing a lot of change into a relatively short period of time. Those experiences pushed me to rethink what contribution, fulfillment, and purpose look like in my life today. Travel has always helped me do that. On trips to Canada in particular, I realized how much I value trying new things and stepping outside my comfort zone. Whether that meant navigating unfamiliar places, saying yes to unplanned experiences or learning to trust myself in uncertain situations. I also learned that I missed working with other people, my brains and my skillset within the limits of my unpredictable health. I love my son but I never envisioned myself as a stay at home mom so when Kelly mentioned her idea for the charity I immediately jumped in and basically invited myself to play an active role. My scientific background and my creative brain will help my work within the foundation as I am mainly focussing on fundraising and making scientific data accessible. I deeply value friendship and connection and I’m excited at the prospect of meeting some amazing people through this foundation, each with their own story to tell.
My story is really just about finding my way through change. I’ve had to adjust, rethink, and start over more times than I ever expected, and each time I’ve tried to keep dancing in the rain even when the rhythm changed. With this foundation I truly believe we can make a meaningful difference for so many people. I understand how it feels when the health care system lets you down, and I hope this foundation helps people find their way back to dancing to their own tune.