Welcome to Women in RARE: Next Gen. Here, we shine a spotlight on female rare disease advocates of the future. First featured in the Women in RARE edition of RARE Revolution Magazine
About you
First hospitalised at 3 weeks old, Kendall Rump spent nearly 17 years navigating life with bewildering symptoms before being diagnosed with Ehlers-Danlos Syndrome. Wishing to contribute in novel research and serve as a perceptive physician, she is pursuing a neuroscience degree at University of Kentucky, with anticipation of matriculating into an MD/PhD program. Kendall has researched lung cancer mechanisms, Arachnoiditis and Chronic Meningitis, and is published in a scientific journal for her work on Postural Orthostatic Tachycardia Syndrome. She reviews grants for the Department of Defense Congressionally Directed Medical Research Program and British Medical Journal. As a passionate advocate for inclusive policy, she is a sitting member on the Rare Disease Legislative Advocates Advisory Committee and routinely shares her story in meetings with congressional representatives. Outside of zebra endeavours, Kendall loves to sing and go to Broadway, bake for any occasion, and read all the books.
Your biggest motivation
My innermost desire is to be a catalyst of helpful progress, actualizing the imperative scientific, legislative, and social changes I’ve yet to see for our community. As a rare patient, not only do I have to battle my body every day, but I also have to battle the continuous failures of the medical and political systems. I’m motivated to help our community eradicate the exhausting diagnostic odyssey and prolific burdens of disease we currently juggle, and also modernize inaccessible systems that were never designed to benefit us.
Your greatest achievement
Genuinely, I believe my greatest achievement is not giving up. Every moment of every night and day, I experience unremitting severe pain from head to toe, disabling symptoms that affect all aspects of my life, and never-ending flares that knock me down flat. Deciding to rise and be steadfast in the pursuit of my aspirations, through the wake of relentless illness, is my most significant personal achievement. Professionally, in 2021, I was thrilled to become a published contributing author to a scientific article in The Journal of Communication Pedagogy. Our research investigated Postural Orthostatic Tachycardia Syndrome patient-physician interactions, analyzing perception of belief and utilization of mHealth (mobile health) technology in pursuit of a POTS diagnosis.
What's next to strive for?
I’m eager for upcoming opportunities to engage congress, NIH, and FDA in updating the infrastructure surrounding rare disease funding, clinical trials, drug development, and centers of excellence. Currently, this ecosystem makes achieving progress in rare disease unduly inaccessible. Modernizing scientific approaches and congressional appropriations to meet the needs of the rare community is markedly necessary. Personally, I’m excited to complete my dual-degree in Neuroscience and Biology, with an MD/PhD (physician-scientist) program following soon after.
Advice to up-and-coming advocates
If you had told me I’d be doing anything to do with legislative advocacy 3 years ago, I would’ve looked at you like you were a Martian. The truth is, I was scared to jump into something entirely foreign. But because of that leap, I’ve not only grown as a person, but have also been able to impart a much greater impact through advocacy. My advice is this: If something scares you, do it! There’s a spark inside of you begging to be heard and freed through that experience. Be open to all possibilities, especially those where you never pictured yourself. Don’t shelter your story because of fear. You are ready right now, exactly as you are. Your voice and experience are the driving forces of change. You are the revolution.
The tide will have turned for the rare disease community when...
The tide will have turned for the rare community when zebras and horses are treated equally. Equity in accessibility, awareness, treatments, policy, and care will be the paradigm shift we’ve long dedicated our advocacy toward. I have confidence this will occur in the near future, owing to the awe-inspiring determination and achievements of rare advocates across the world.
Socials
Instagram: @kendallrump
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