After three months in Immigration and Customs Enforcement custody, a Filipino green-card holder who had been arrested at Seattle-Tacoma Airport has finally gone home.

Today I got to start taking an experimental drug that hopefully will treat my form of mito. Who knows if it'll work but my family & medical team have worked hard for this moment. I feel incredibly lucky to have the oppurtunity to at least try! I'll be posting more here: www.devinshuman.com/guk1

Are you the flavor of chronically ill that bakes cookies for all of your doctors and delivers them to their offices on your day off as a thank you for taking care of your brother during his 1 month admission? #SpoonieStressBaker

My dear friend’s niece, who in October developed sepsis when a Georgia hospital refused her a D&C after a miscarriage, will be taken off life support tomorrow. I don’t know the names of the countless others who have suffered and will suffered because of anti-abortion laws. But her name was Haley.

The FBI is trying to criminalize Habitat for Humanity for receiving climate grants from the EPA. Yes, the nonprofit that builds houses for low-income people. This clearly demonstrates just how absurd and extreme the Trump regime has become. It's targeted harassment.

“For all this talk about free speech, this is direct censorship of scientific research.” www.nature.com/articles/d41...

After we published a public audit on Saturday, Elon Musk’s DOGE deleted hundreds more claims from its mistake-plagued “wall of receipts,” wiping out an additional $4 billion in so-called savings that the group had claimed to secure for U.S. taxpayers.

I am beyond thrilled to see this group grow out of the unofficial I created previous years by offering to send cards to those who didn't pass a cycle and then connecting them via email. Madison Burns, MS, CGC is amazing for doing this! *I am still here to send cards too

Re: misleading claims that disabled people "love" sheltered workshops: Journalists found that "The seemingly widespread support among sheltered workshop employees & their families masked the failure of the state to provide them with meaningful employment options." www.propublica.org/article/what...

honor of #RareDiseaseDay, GSF will be hosting a "Disability Community Connections" monthly Zoom meetup for GC with disabilities to connect and support one another. Join them on the fourth Tuesday of every month at 12pm PST. Register here: shorturl.at/FeFTV GC grad students welcome!

perspectives.nsgc.org/Article/its-.... For rare disease day we ask, stop doubting GCs with genetic conditions in our ability to counsel patients about our condition

I was today years old when I remembered that the founder of ABA therapy was also a founder of conversion therapy...which tracks... but YIKES en.m.wikipedia.org/wiki/Ole_Iva...

Thousands of ICE press releases about decade-old enforcement actions topped search results, all updated with a timestamp from after Trump’s inauguration www.theguardian.com/us-news/2025...

"We will not retract published articles on request by an author on the basis that they contain so-called banned words" @bmj.com takes a stand: "Medical journal editors must resist CDC order and anti-gender ideology" www.bmj.com/content/388/...

Huge protest outside the USAID building today against Trump and Musk's illegal shutdown.

Disability is not the cause of that crash. Go screw yourself white house. 🤬

Thank you @seattletimes-rss.bsky.social for publishing my Op-Ed today. RFK Jr.’s “confirmation would undermine public health and betray hardworking health care professionals and researchers who work relentlessly to keep our patients safe and healthy” www.seattletimes.com/opinion/a-nu...

Teen Vogue coming through with excellent reporting on pressing issues: “When ICE agents stake out neighborhoods, it affects everyone — families living in fear, businesses struggling to retain workers, schools wondering why children are missing class, & communities watching their social fabric fray”

This whole interview @maanvisingh.bsky.social did with @sfdirewolf.bsky.social is good, and this bit in particular stood out to me as such an essential perspective on belonging, community care, and disability justice www.theguardian.com/society/2025...

Governor Gavin Newsom at the Pacific Palisades Fire on President Biden: "It didn't take more than a text message...no politics, no hand-wringing, no kissing of the feet. President of the United States said 'yes, what else do you need? The emergency proclamation is being drafted as we speak.'" 👏

As of January 1, Minnesotans won’t have co-pays higher than $25 per month for prescription drugs used to treat chronic diseases, and we’re putting a $50 per month cap on all related medical supplies. We’re putting the wellbeing of our people before the profits of big pharma.

If you think you might have Covid - or you’re just feeling sick - stay home this holiday season. Don’t be the reason someone’s loved one ends up in the hospital (or worse). If you absolutely can’t stay home - wear a well fitted respirator. You could save a life.

May I introduce y'all to my new favorite stickers? #mitochondria #sciencestickers #pridochondria #genechat found at fresh crayon store on Etsy!

Posted this at the old place, but thought folks on @bsky.app might like to know I finally met my "mother".

Such a horrible reason to have such an important discussion. Health insurance in the US is broken and is killing millions 💔 Https://www.buzzfeed.com/morgansloss1/stories-of-healthcare-claims-being-denied

Reminder on #GivingTuesday to not use #Disabled people as your inspiration porn to obtain donations. Also please resist the urge to feed into the pity/tragedy model of disability to fundraise either. PSA: Not all Disabled people want cures. youtu.be/8K9Gg164Bsw?...

People have received their cards so I no longer have to keep it a secret. Community is how we survive and maintain hope so when trump won again, I made some colorful cards to send to 50 friends and remind us we're not alone. And to validate ALL of the big feels.

I dreamed GCs did house calls to check on patients who no showed appointments. It was chaos. 0/5 stars recommend. #GeneChat Though now that I think about it, I would get to likely pets lots of dogs 🤔

ANNUAL BLACK FRIDAY PSA Dont fall for direct to consumer testing sales (sequencing. com, nebula, dante).These tests are not medically accurate, cannot be used for medical care, are 99% false positives, misrepresented, or normal variations. Please don't waste your money. Your local genetic counselor

I know I'm probably late to the party but sky follower bridge is magical! Also the data twitter gave you in rhe "download your data" is such useless trash

Everyone needs to read this. Now more than ever as there is a war on basic health info and puberty info is labeled terrorism in project 2025 www.goodreads.com/book/show/37...

Alt text: embroidery. First picture shows “this is fine” in big red letters. Second photo shows that close up, each letter is made up of the small stitched word “fuck” repeatedly.

BIG NEWS: A Wyoming judge just struck down WY's abortion bans. And get this: The judge invoked a constitutional amendment codifying a right to make health care decisions... that was passed in 2012 by conservatives who thought it'd screw Obamacare! Just backfired. We explained this lawsuit here:

TLDR: the paper on my family's gene came out *cue GC nerd excitement 2009: diagnosed with mtDNA depletion syndrome by muscle biopsy. 2017: became a GC. 2024: thrilled to announce that my family's paper about our candidate gene was published! #Proband2 2025: repurposing a drug lnkd.in/dDfuxtW3

I’m happy to share this DEIJ Language Considerations Guide project I worked on is on the ACGC website now! A video walking through the different sections is in the making as well. Check out the language guide here: lnkd.in/gw4MCesr

Hi, I'm a scientist, educator, equity advocate, and author. I'm working on final edits for my forthcoming 📖 "Where Biology Ends and Bias Begins: Lessons on Belonging from Our DNA" and can't wait to share it with you all! Info below & register for ordering notice here: forms.gle/ax9Tsja4JkSf...

It's that time of the year again - GC boards. I didn't pass mine on my 1st try. If you didn't pass your boards, I see you, I validate all emotions, and I'd love to 1. send you a card and 2. connect you with others who didn't pass this cycle as well. DM your address/email

Getting #CovidVaccine #10 while #YallMasking #SaltingTheVibes #CovidIsNotOver

Rare Disease Provider PSA: 1. Don't ever phrase a question to a patient like "you don't have xyz symptom, right?" or "well it can't be that, because you don't have XYZ symptom" (without asking first if they do or dont)

Happy pride all my genetics and rare disease friends! #GeneChat #LGBTGC

Don't just "let" disabled people lead. Make leadership roles accessible and actively prioritize #disabled candidates.

As people start to mask again (for those of you who stopped) let this be the reminder that surgical masks are barely better than cloth ones. Please get actual KN95 or N95s ❤️

Enough is enough. I will NEVER understand why this country has chosen NRA propaganda over thousands of lives. #EndGunViolence and vote in basic, human decency gun safety laws. #VegasStrong support orgs fighting for these laws! Everytown, @momsdemand.bsky.social Sandy Hook Promise, Gun Safety Now

There's something heart warming & soul soothing about spending a Sunday afternoon writing letters of recommendation. It is truly a wonderful state to put your brain in - one of singing the praises of others & wishing them success. Honored to play a role in their journeys ❤️

Reminder from a fb post I saw: In the spirit of the holiday season, don't wrap handrails with holiday decorations - it prevents those who need them from using them. #AccessibilityMatters #DisabilityInclusion

In October, the #mitochondria is the haunted house of the cell. Let's call it, the #frightochondria

Ironically, my #MitochondrialDisease #awarenessweek blog is a wk late. #RareDiseaseTruth is that govs can destroy rare disease families lives w/ false medical abuse accusations & restricting access to treatment There are 3 stories happening right now blog.geneticsupportfoundation.org/index.php/20...

15 years ago I learned what the mitochondria are 14 years ago I was diagnosed with mtDNA depletion syndrome 8 years ago we identified GUK1 as the AR cause 6 years ago I became a GC 5 years ago we made a GUK1 mouse model 1 year ago I started seeing mito patients & giving lectures on mito #MitoGC