Rare Disease Advocate | Classical Ehlers-Danlos Syndrome | Adaptive Sports Enthusiast | Collector of Quotes | Occasional Superhero | she/they
Joined April 2022
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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
ALT Legs are propped up on a bed and a TV sits atop a navy dresser directly across from the bed. A scene from Buffy the Vampire Slayer is on the screen. The walls behind the TV are yellow and a door covered with lots of drawings from kids is next to the dresser.
Abbey Hauser retweeted
"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
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
ALT Hand holds up a stack of prescription papers that is about an inch thick
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
OwningMyStory.com/mri-musing…
“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
“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.
Hey, I know them! 😉
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: bit.ly/Meet_Abbey!
This research is so exciting!
@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: on.bchil.org/43O8kaq
#DyskeratosisCongenita #TelomereBiologyDisorder
ALT 4 simplified graphics of dark blue chromosomes with light blue caps on the end representing the telomeres. Each chromosome has a progressively shorter telomere.
Can’t wait for my first handcycle ride of the season for a virtual MDBR! 🚴🏼♿️
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 bit.ly/TTMDBR2023
ALT Text at the top reads “Join us tomorrow from wherever you are” and is above a logo that includes the skyline of Philadelphia with the phrase “Team Telomere Million Dollar Bike Ride 2023” below it. Icons of a bike, handcycle, indoor bike, person walking, person wheeling and a person doing yoga line the edges of the graphic. The hashtag “MDBR2023” is at the very bottom.
Looking forward to this event in less than 2 weeks!
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: bit.ly/MDBRabbey
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
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I don’t think I’ve played a more lively game of Life in my entire existence. The chaos, laughter and jokes were the best way to start the day. ☀️
#TeamTelomereFamilyCamp #CampSunshine
While the adults hear from doctors this morning, the 8-12 year olds are enjoying a lively game of Life, filled with lots of laughter, imaginative storytelling and many jokes.
I wish you could hear the giggles occurring during this game! ☀️
#TeamTelomereFamilyCamp
ALT A group 4 young boys and 2 adult females sit around a picnic table playing the board game Life.
Sharing my story of transitioning into adult medical care with the #TeamTelomere community is one of many highlights of #CampSunshine!
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It’s been a great day at Camp Sunshine today! ☀️ 🛶 #TeamTelomereFamilyCamp
Good morning from Camp Sunshine! While the parents are in educational sessions this morning, the 8-12 year olds took to the field for soccer and later learned magic tricks from @GoCampSunshine volunteer Glenn. #TBD #TeamTelomereFamilyCamp
ALT A sign that reads “Camp Sunshine - Casco, Maine” with trees in the background
ALT Kids and volunteers play a game of soccer
ALT 4 kids are gathered around a picnic table watching an older camp volunteer do a magic trick with a dollar bill
“There’s always hope. Even if it’s only the hope that there *might* be hope somewhere at the end of the pain. Sometimes that’s enough.”
- Al Ewing, ‘Doctor Who - Chapter 8, The Infinite Astronaut’
(Read on 5/15/23)
#Hope #Quotes #RareDisease
⚓️⛵️Thanks for sharing! @_allstripes
.@OwningMyStory is a young adult living with #classicalEDS. Learn more about their journey with transition of care and becoming the captain of their care team. nihrecord.nih.gov/patient-ra…
Abbey Hauser retweeted
.@OwningMyStory is a young adult living with #classicalEDS. Learn more about their journey with transition of care and becoming the captain of their care team. nihrecord.nih.gov/patient-ra…
What makes me angry about EDS?
I am 28 & most of my friends with EDS are around my age. Yet, not a single one of them were dx’d in childhood. Not one.
My experience being dx’d at 7 with #ClassicalEDS shouldn’t be uncommon. My friends and this community deserve better.
#EDS
I got to have dinner with @RareDiseaseDad and his wife during their layover in Minnesota tonight, so it’s safe to say tonight was a very good night. ✨
#RareFriendsAreTheBestFriends
“You are powerful enough to evolve. That’s where the magic is. And that’s where you find your light. It will be bright and endless. It cannot be destroyed. It is infinite. It is you.”
- Gabby Rivera, ‘Life and Times of America Chavez, Issue 1’.
(Read on: 4/29/23)
I’ve never pre-ordered a book from my local bookstore faster than I have this book. @jowrotethis and @Da7e are great writers and podcasters, no one I’d trust more on this subject. Congrats on the book and gorgeous cover! 👏🏼
So of course it would mean a great deal to me if you pre-ordered this thing that @Da7e and @mrgavinedwards and I poured literal years and years of our lives into. I actually think it’s…good?
Link to all (including yes local and indiebound!) booksellers: wwnorton.com/books/978163149…
