I’ve never pre-ordered a book from my local bookstore faster than I have this book. Joanna Robinson and Da7e Gonzales are great writers and podcasters, no one I’d trust more on this subject. Congrats on the book and gorgeous cover! 👏🏼

“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 got to have dinner with Adam Johnson - DadVocate and his wife during their layover in Minnesota tonight, so it’s safe to say tonight was a very good night. ✨ #RareFriendsAreTheBestFriends

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

.Abbey Hauser 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-rare-d…

⚓️⛵️Thanks for sharing! AllStripes

“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

It’s been a great day at Camp Sunshine today! ☀️ 🛶 #TeamTelomereFamilyCamp

Sharing my story of transitioning into adult medical care with the #TeamTelomere community is one of many highlights of #CampSunshine!

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

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

Looking forward to this event in less than 2 weeks!

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

This research is so exciting!

Hey, I know them! 😉

“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 Vasculitis Foundation

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-musings

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

"Wherever you are in your journey with your diagnosis or the one you support, you are meant to be here." - Abby Hauser (Abbey Hauser) #RareDisease #RareDiseaseWeek2024 #RareDC2024

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 Buffering: A Rewatch Adventure. s/o to Joanna Robinson for mentioning it often on the Ringer-Verse over the years. 10/10 obsessed. #GlimmerChasing