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Standing Up to POTS Profile
Standing Up to POTS

@POTSActivist

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SUTP works to improve quality of life for people living with postural orthostatic tachycardia syndrome (POTS) through research, advocacy, and support.

Springfield, OH
Joined December 2014
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@POTSActivist
Standing Up to POTS
2 days
Our largest fundraiser of the year is the annual 5K/2K. We appreciate all of the support around this event, and hope to continue to fund #POTS research with your help. Donations of all sizes make a difference! You can donate once or every month at https://t.co/55lwpuT1EC #SUTP
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@POTSActivist
Standing Up to POTS
5 days
We hope that you will support #SUTP today as part of the national movement to support non-profit organizations on #GivingTuesday. We are a group of volunteers that run the #POTScast and have already awarded >$660K to top #POTS researchers globally. https://t.co/55lwpuT1EC
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@POTSActivist
Standing Up to POTS
6 days
Jace had a long wait for treatment, but in the meantime graduated college, got an advanced degree, worked on state and federal health policy, made art and much more. Hear Jace’s advice and thoughts on the ADA and accommodations. Listen on your favorite or https://t.co/23sxCQqsYg
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@POTSActivist
Standing Up to POTS
7 days
To everyone who has ever believed us when we described our symptoms, who didn't question our limitations, and who accepts our truth: thank you. You are what empathy looks like in action. #POTS #ChronicIllness #invisibleillness #motivationalmonday #dysautonomia
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@POTSActivist
Standing Up to POTS
12 days
Brianne, Co-Chair of React19, shares an update on science-backed resources, research findings, lobbying efforts, grants, compensation program, a book and documentary film made about her own story and more. listen on your favorite platform or at https://t.co/oxcOxWJYYB.
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@POTSActivist
Standing Up to POTS
14 days
Here at Standing Up to POTS, we're thankful that we are part of such a wonderfully supportive community. We're thankful for YOU. #POTS #POTSactivist #thankful #dysautonomia
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@POTSActivist
Standing Up to POTS
20 days
Eboni Cornish, M.D. is nationally recognized for her evidence-based work in neuroinflammation in complex chronic illnesses. Her clinic integrates SPECT brain imaging with advanced biomarker testing to uncover root-cause brain imbalances. https://t.co/23sxCQqsYg
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@POTSActivist
Standing Up to POTS
21 days
You can honor the parts of yourself and your life that you’ve lost while still celebrating your strength and growth. You can miss who you were and love who you’re becoming. #POTS #chronicillness #dysautonomia #strength #motivationalmonday #awareness
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@POTSActivist
Standing Up to POTS
26 days
Our 12th annual 5k/2k raised record funds for POTS research! Thanks to all who donated and participated! This episode contains brief interviews with several participants while they were waiting for the event to begin. https://t.co/23sxCQqsYg
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@POTSActivist
Standing Up to POTS
28 days
There's no right way to be sick. There's no wrong way to try to manage it all. Living with a chronic illness is deeply personal and individual. Your path is what's right for you. #POTS #dysautonomia #chronicillness #motivationalmonday #SUTP #awareness
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@POTSActivist
Standing Up to POTS
1 month
Dr. Groysman discusses his experience with stellate ganglion block, Epipharyngeal Abrasive Therapy (EAT), vagal nerve stimulation, other novel but evidence-based treatments, plus the 6 main underlying mechanisms at work in this family of conditions. https://t.co/23sxCQqsYg
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@POTSActivist
Standing Up to POTS
1 month
Having a chronic illness is hard. Even harder? Having to miss important events. I always want to show up. Please be patient on the days I can’t. #POTS #dysautonomia #motivationalmonday #POTSawareness #invisible
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@POTSActivist
Standing Up to POTS
1 month
We are so grateful to the sponsors of the 12th Annual #SUTP 5K/2K. These businesses have donated to our #research fund, and will help us to continue awarding research grants to top #POTS experts globally into the future. We hope that you will support these businesses!
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@POTSActivist
Standing Up to POTS
1 month
Dr. Jill Krapf, OB/GYN, founder of the Center for Vulvovaginal Disorders and author of When Sex Hurts: Understanding & Healing Pelvic Pain, discusses mechanisms, treatments, how mast cells may be involved & more. Listen on your favorite platform or https://t.co/oxcOxWJYYB
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@POTSActivist
Standing Up to POTS
1 month
A fainting goat? A salty shaker? What's your favorite POTS-friendly Halloween costume? #POTS #POTScostume #Halloween #dysautonomia #trickortreat #spooky
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@POTSActivist
Standing Up to POTS
2 months
Tristan puts the patience into being a patient despite starting most days vomiting, but he remains upbeat and even shares his successful chronic illness reference that he used on Tinder! Listen on your favorite platform or at https://t.co/23sxCQqsYg.
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@POTSActivist
Standing Up to POTS
2 months
There's no instruction manual for how to live with #POTS. You get to decide what's right for you. #motivationalmonday #POTSawareness #chronicillness #spoonie
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@POTSActivist
Standing Up to POTS
2 months
A huge THANK YOU to #Normalyte for once again sponsoring our annual #SUTP 5K/2K! They are committed to helping POTS patients manage symptoms, and actually have a scientific paper showing that their product helps to decrease #POTS symptoms. https://t.co/elufLAKpwL
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@POTSActivist
Standing Up to POTS
2 months
A big THANK YOU to the Solomon Group Coldwell Banker Heritage for once again sponsoring our annual #SUTP 5K/2K! We really appreciate their support over the years, and hope that you will support their business. #POTS #5K #realtor
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@POTSActivist
Standing Up to POTS
2 months
Dr. Kendal Stewart, former skull surgeon, addresses root causes of neuroimmune conditions.  He discusses the value of genetic testing, ‘hypo-adrenergic’ POTS, nutrigenomics, plus novel treatments he uses such as exosomes, peptides, CBD, and more.   https://t.co/23sxCQqsYg
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