Abbey Hauser

Rare Disease Advocate | Classical Ehlers-Danlos Syndrome | Adaptive Sports Enthusiast | Collector of Quotes | Occasional Superhero | she/they

[Abbey Hauser @OwningMyStory]

@jowrotethis Late to the party, but spent my Saturday working on an Indie bookstore crawl via the Twin Cities Passport, and had a fantastic time at my annual tradition! Shopped at 13 between Wed-Saturday, and the crowds were incredible ✨

[Abbey Hauser @OwningMyStory]

If my rare disease *had* to cause another spine stress fracture, at least this time I’m finally watching Buffy the Vampire Slayer and listening to @bufferingcast. s/o to @jowrotethis for mentioning it often on the @RingerVerse over the years. 10/10 obsessed.

#GlimmerChasing

[Abbey Hauser @OwningMyStory]

@jowrotethis spotted your book in the wild on Independent Bookstore Day! It was in the small adult books section of my favorite childhood kids bookshop in Minnesota. What a magical sight! ✨

[Abbey Hauser @OwningMyStory]

@ZebraBimbo @scenequeenrocks @bibipins Trial and error in training will be your best friend in solving what specifically works for you. Like what carb ratio for fuel and how often. And what you tolerate consuming while running/moving. I used a few trainings to just be for playing with that and didn’t worry about pace.

[Abbey Hauser @OwningMyStory]

@ZebraBimbo @scenequeenrocks @bibipins Hello! Definitely check what you can carry into your race (all are different) and use your trusted electrolyte source that works for you. I use the run/walk method for non-POTS reasons but it could help there too. Food with salt can work too, or other fuel sources.

[Patient Worthy @PatientWorthy]

"Wherever you are in your journey with your diagnosis or the one you support, you are meant to be here." - Abby Hauser (@OwningMyStory)

#RareDisease #RareDiseaseWeek2024 #RareDC2024

[Abbey Hauser @OwningMyStory]

@ZebraBimbo @aquariusxmars Otherwise it’s compression socks, support pillows for the plane, extra meds taken - not just waiting until fully needed -, and hoping for the best. I’ve narrowly made it a few times during a flare, but 3 hours is about the longest I’d fly in a flare too.

[Abbey Hauser @OwningMyStory]

@ZebraBimbo @aquariusxmars Late reply - probably not helpful now lol, but during flares I’ll use the wheelchair escort and essentially try to walk as little as possible. This includes taking the chair to the plane door too. You can ask them to stop at bathrooms too.

[Abbey Hauser @OwningMyStory]

August in a photo, new prescriptions edition. If you value your bank account, happiness and health - I do not recommend having c diff, norovirus, oral thrush and then rounding out your month with covid. 🙃

+ still having a rare disease
#RareDiseaseTruth #ThisIsFine #cEDS

[Abbey Hauser @OwningMyStory]

@OnceUponAGene @RareDiseaseDad @SeanBaumstark @NeenaNizar I might ‘technically’ be able to pass these days, but I wouldn’t feel safe. My joints feel very vulnerable and unstable in the water. I much prefer using an approved life jacket and being with others.

My adaptive kayaking ‘wet exit’ tests are always done with life jackets.

[Abbey Hauser @OwningMyStory]

New Blog Post • MRI Musings •

“So, to my friends with chronic illness struggling with changing baselines, I see you, and we are in this together.”

#EDS #cEDS #ClassicalEhlersDanlosSyndrome

https://t.co/WCy1QT3IAL

[Abbey Hauser @OwningMyStory]

“You can’t unknow what you already know” is another line that stuck with me. Once we know the lingo it’s hard to see where we use it and when our content stops being accessible to the general audience.

So much to reflect on today with the @VasculitisFound

[Team Telomere @TeamTelomereInc]

“Beware of the Curse of Knowledge”

How do you ensure information is accessible in your presentations?

Our Comms Coordinator attended a speakers training by the @VasculitisFound and it got us thinking about how we present information in the rare space.

[Abbey Hauser @OwningMyStory]

Hey, I know them! 😉

[Team Telomere @TeamTelomereInc]

We are thrilled to announce our newest staff member - Abbey Hauser @OwningMyStory! They will be serving as our Communications Coordinator, furthering TT’s passion for community while driving science forward. Join us in welcoming Abbey and read more here: https://t.co/iI4kTk21Zz!

[Abbey Hauser @OwningMyStory]

@rarelikeher @remember_girls @Srotberg15 @LaurenCTesta @LaurenLichten @aishuarjun @OnceUponAGene @GillianHSapia @sickle_t Of course! Sending to my networks now!

[Abbey Hauser @OwningMyStory]

This research is so exciting!

[Team Telomere @TeamTelomereInc]

@BostonChildrens shared an article this week summarizing the incredible recent research in telomere lengthening and thymidine @Naturegenet by @Agarwal_Lab and @wmannherz! Check it out here: https://t.co/ZdWPe43ZAj
#DyskeratosisCongenita #TelomereBiologyDisorder

[Abbey Hauser @OwningMyStory]

Can’t wait for my first handcycle ride of the season for a virtual MDBR! 🚴🏼♿️

[Team Telomere @TeamTelomereInc]

Although our in-person Million Dollar Bike Ride was canceled for community air quality safety, we are still riding and celebrating from home! Please tag us in your photos or use the hashtag #MDBR2023 so we can cheer you on. Donations can still be made at https://t.co/jbak7IBXXV

[Abbey Hauser @OwningMyStory]

@wishkhh @project_sleep Congrats!!!!

[Abbey Hauser @OwningMyStory]

Looking forward to this event in less than 2 weeks!

[Team Telomere @TeamTelomereInc]

Thank you to our board director, Abbey Hauser, for their amazing fundraising efforts for the @MDBRide4Rare! Your dedication to raising funds for TBDs research is truly inspiring. Together, we can make a difference. 🚴‍♀️🧬 Donate to Team Abbey here: https://t.co/bvNnvLfZdr

[Abbey Hauser @OwningMyStory]

@RareDiseaseDad @Nike @AFCRichmond @jasonsudeikis @brendanhunting @hanwaddingham @brettgoldstein @JunoTemple @nickmohammed @phildunster @Toheeb_Jimoh @cristofernandez @TedLasso

[Abbey Hauser @OwningMyStory]

Getting involved in policy advocacy doesn’t have to be intimidating! Join us at @EveryLifeOrg to continue getting involved or reach out to me at any time. ☀️ #EveryVoiceMatters #RareDisease #TeamTelomere