Editor’s Note: Multiple Sclerosis News Today welcomes Laura Kolaczkowski to our team of Patient Specialists and MS bloggers. As you will read in her introductory post below, Laura brings to her new column a wealth of Multiple Sclerosis related insights, both as a patient and activist/advocate for raising awareness and research efforts for the disease. Be sure to tune into “Engaging Thoughts” every week for a new perspective on the effort to better treat and eventually cure Multiple Sclerosis.
I’m not one to do things just half-way. If I were to participate in a world poker tournament, I would either win it all or go bust on the opening hand because I would push that entire stack of chips to the center of the table.
My life with MS is that way, too . . . I’m all in! Having multiple sclerosis is a lifetime relationship, at least until a cure is found. Until then, I don’t want to just go steady with my MS, I want to be engaged. I want to be “all in!” There is no need for a large, flashy diamond ring to indicate my status — my ever-present foot drop and cane are enough of a sign to the world that I carry this companion with me.
So what might this mean for my personal engagement with MS? Being engaged means I’m doing all I can to change my personal course of the disease — you know, all those things that neurologists tell us will make a difference. Or at least, I try to do them most of the time. There’s no faking it in this alliance; I’m always honest with my MS and my neurologist because there’s no sense in building a relationship on false pretenses.
On a more global scale I’m engaged with MS through research, MS advocacy, and patient empowerment. I’ve a business card that reads, “healthcare activist.” I became an activist because I’ve learned that saying nothing gets us nowhere, and there is a lot to be said about our healthcare system and problems that need to be addressed. I’m into advocacy because there is a lot to be said about bringing about change by being a thoughtful, contributing person, working within the system. Perhaps my card should read “activated advocate,” but that sounds as if I might glow in the dark.
This leaves me with how I am engaged through patient empowerment and research. I’ve always had an inquisitive mind and wanted to know more, especially about the research process. I also listened to enough School House Rock with my children to believe knowledge is power, and when I couple that belief with learning more about research, amazing things begin to happen. A few years ago I became involved as a patient voice for the Accelerated Cure Project in Boston. People there were working on a funding submission to establish a patient-powered multiple sclerosis research network, and I was asked to be their lead patient. We were successfully funded, and as the project has evolved, so has my engagement in the research process. I am now the co-principal investigator for iConquerMS™, and proud to say we have almost 3,000 people affected by MS participating in our patient-driven research agenda. Our ultimate goal is to enroll 20,000 people who are willing to help shape meaningful research that will improve the quality of our lives and even, perhaps, lead to the cure.
This has been quite the learning process for me, a person with a liberal arts background who barely squeaked through Geology in college, let alone begin to understand the heavy-duty science of MS. Biology scared me then, and it still does. You won’t find me talking about research that looks at T cells, B cells, O-bands, and all those other alphabet-soup derivatives; I am focused on the social impact of MS and how our access to information has changed what living with MS used to look like. How we communicate about MS with our healthcare providers, our family, and with each other is every bit as important a research topic as specimens that are studied through a microscope.
My role with iConquerMS™ has taught me more about research than I ever dreamed I would want to know. At first it was so complex that I wanted to shy away, but remember what I said … I’m the “all in!” person, so I struggle with the concepts, hang in there, and hope to better understand how research is really shaped.
Through “Engaging Thoughts,” my column for Multiple Sclerosis News Today, I hope to demystify the process for the reader, as well as share what I have learned about conducting research and the differences between good and bad science for advances in MS. I’ll be writing about research from the perspective of a lay person as a work in progress with much to learn. My own engagement with all phases of MS is a work in progress, and one I hope you will join me in — I always did like double-dates.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this blog article are not those of Multiple Sclerosis News Today and are intended to spark discussion about issues pertaining to Multiple Sclerosis.
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