🧠 Young Stroke Survivor | šŸ¦“ Rare Disease Zebra | šŸ“š DPhil @UniofOxford @NDORMS @GreenTempleton | šŸ’¼ RWE Guru / @OHDSI Titan | Views are my own, not my twin’s.

Boston, MA
Joined June 2009
Kristin Kostka retweeted
Auditioning for office mascot
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BIG NEWS!!! On Sat, Sep 14, I’m making a comeback to running and hosting a K Comeback 5K at Jamaica Pond. I’m also fundraising a scholarship for neuro-adaptive athletes to get access to gyms like mine and improve QoL! #BetterThanGoodEnough Check it out!! gofundme.com/f/join-kristins…
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…I act like it’s my birthday everyday 🄳🄳 Ran a birthday 5K! Would love to go harder but this is what’s safe. We’re building! #BetterThanGoodEnough #ComebackEra
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In our Championship era! #Celtics #NBA
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Maslow loved hanging with @rheum_cat and experiencing the infamous Buttery fries! 🤤🤤🤤
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Joe Mazzulla reminding everyone that it’s possible to be a great leader at 35. šŸ™ŒšŸ»
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Just when I think things can’t get any stranger (medically), this week I learned I have a midgut malrotation and left sided appendix. One review I read claims it occurs in 0.03% to 0.5% of live births. I am the intersection of so many rare medical statistics. It’s bananas.
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I stopped and looked up. Admiring the hazy sky under a lush canopy of mature trees. A few feet ahead, I saw another older woman doing the same. ā€œBeautiful, isn’t it?ā€ I said ā€œSpectacular.ā€ She replied. Fam. Life is short. Enjoy it. Take it all in.
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Even if you can’t feel your feet, you can still experience the joy of dancing under the stars. 🤩 (Not pictured: wearing my FL-41 glasses so I could enjoy the festival without being sick from severe photosensitivity.) Being disabled doesn’t mean I can’t have a full life.
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SO beyond grateful to have Fit to Function in my life. In a world where I am passed around like a hot potato, working with Jenna is a huge blessing! She makes me feel human again. #betterthangoodenough instagram.com/reel/C69NQEouB…
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For every high, there’s a low. Coordinating care is so frustrating and disenfranchising. I hate it here.
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Today the @TuftsMedicalCtr SAYA (Stroke and Young Adults) Fitness Club crushed a 5K for @TedysTeam @trilliumbrewing! This is my first organized 5K since my dissection last Oct. Relearning how to run safely is a huge milestone in my recovery. #YoungStroke #MarfansSyndrome
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Ah, the meditation of a chocolate croissant by the river on a nice day.
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Yesterday I safely ran nearly 5K. It’s a HUGE milestone for me. I’ve had two vascular events around being more active. Doing what I love while being safe is critical to my recovery. I’m so grateful to have found this rehab program. It’s doing wonders for my mental health.
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Maslow loves May flowers.
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It’s such a privilege to hear @ElonConnieBook speak tonight in Boston at an evening for @elonuniversity @elonalumni!! Proud to be a top 10 under 10 alumna, #GoPhoenix #ELON
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Marlee the therapy dog is one of the best parts of my new adaptive fitness gym, Fit to Function. Trying to safely add more activity to my life. šŸ¤žšŸ»
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Did not feel good after my workout. 🤢 Recovery is so goddamn hard.
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