He’s already told us. It’s “mitochondrial challenges.” Never fear, he has a supplement for that.
She’s a disability caregiving, native gardening, theater loving, science learning, potty joking, begrudging non-profit founder with a heart of California Gold 🍊
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He’s already told us. It’s “mitochondrial challenges.” Never fear, he has a supplement for that.
No. She is an American traitor. 5 million wasn’t enough???
Also an excellent guide to patient advocacy or medical caregiving tbh
Hot and fresh from the oven! New paper on #ADSLDeficiency #complementpathway #genetic #metabolic #enzyme
‘Mistake’ perfectly encapsulates this entire administration.
In Opinion | In California, immigrants are the backbone of America’s food supply. Robert Rivas and Shannon Douglass say “what our immigration enforcement agencies are doing now, in many instances — treating hard-working, law-abiding immigrant workers as if they are violent criminals — is a mistake.”
TRAINING to be an HoNoRaRy ICE Agent?!
Oh no…so embarrassing…
Wow
We had zero in rural CA in 2000 😔 Was the stage ramped at your ceremony?
He needed a diaper change and regrettably, there are no adult changing tables along the route.
I’m trying to see it any other way and I think this is the only reasoning that makes sense. Can they even walk at the ceremony?
In the words of Michael Jackson “Don’t stop til you get enough.” 🇺🇸
At least he will be very, very lonely!
SCOTUS is compromised.
Here in CA-03 I’m ready for Kevin Kiley to get his ass handed to him. I sat in his office with my disabled kids and he said “Let us know if there’s anything we can do for you.” When I said no votes to cut Medicaid he said 🦗🦗🦗
Just telling myself a little brain story where a person commits a crime and is tried in court and the foundation of their defense is “If the President does it, it must not be illegal.”
I’ve had the chance to see a few Sargents up close, and I know seeing the folds in that fabric up close would have me 🥹 Really love to imagine him ‘tailoring’ with paint
Stopped me in my tracks this morning. Thanks for sharing.
I am a mother of disabled children. I am a teacher, a nurse, a weight-lifter, a pharmacist, a therapist, a neurologist, a researcher, a bitch, a Karen, a super-mom, a president, a failure, an inspiration, a tragedy, a voice of the voiceless. I am America.
I really agree! I’m raising non-verbal disabled kids and I learn so much about how to advocate for their needs from you Julia.
Brilliant!
I created a resource for siblings and friends of people with ADSL Deficiency to understand the basics of the disorder. Turns out, it’s really helpful for adults too! #ADSLDeficiency #raredisease #metabolism #science
What fresh, humiliating hell awaits Americans today?
Meanwhile Trump is cancelling mail-in ballots because “fraud”.
Ugh, you’re right. Violence feels kind of parasitic in that way. Once it gains control of the host, it multiplies
I believe more Californias will be willing to vote for emergency redistricting as we continue to watch the expanding militarization of DC and beyond. #kevinpkiley #CA-03
Putin left because the filet mignon was served with ketchup.
Senior white liberals are leading the charge in my town.
This is not nice of me, but I hope that Proud Boy has a TBI. Disgusting
That McDonalds microbiome is really throwing him off I guess
Someone needs to make that jet accessible for disabled dictators!
I guess the offer of unlimited Big Macs didn’t seal the deal?
Particularly disgusting that Trump would “suspend deportations in some industries.” It’s almost as if “criminal illegals” aren’t a real issue, if the perceived threat can be so easily disregarded.
She knows he can’t do it…
You’re right. They were expecting a scary beast and it’s just…..Pam who bags your groceries.
Where I grew up in the hills of CA, there’s an astonishing lack of human variation of any kind. Anyone who is “different” leaves as soon as possible. I tried for so long to believe it was just their ignorance and they would come around. I really tried.
Yes and “trans women in sports.” This is of grave importance to my maga family who not only have never seen a trans person irl, they also do not play or care about sports.
🔥 FLASHBACK: “You’ve made a lot of money getting on here spewing lies to folks who trusted you… did Trump lose the election in 2020?” The time Texas Rep. @jamestalarico.bsky.social called out Hegseth to his face on Fox News is making the rounds again 👇🏽
www.defendpublichealth.org/press-releas...
Oh. So extortion?
And don’t even get me started on the fact that my kid hasn’t had a working seatbelt in our converted van thanks to #mobilityworks. It’s astounding.
I just posted on Insta about how my kids manual wheelchair is held together in places with zip ties. We’re Numotion customers. The # of times they’ve sent mechanics into my home with no experience with disabled bodies is 🤯. Apparently there is no money in pediatric mobility aids…and it shows.
Who is getting fired this time? And what ‘evidence’ will they find a week later to support that termination?
Precisely. I WANT to understand good science because my kids’ lives truly depend on it. But I have a BA in Theater Arts. #ADSLDeficiency
New paper on the evolution of the ADSL gene between Neanderthals and humans and the effect on mouse behavior 🧪 #adsldeficiency #neanderthal #science
I did not know that. 😬
My 29 year old friend had chikungunya. She struggled to ride a bike a year after her infection due to the pain in the joints of her ankles and feet.
We figured out to *cure cancer* (ref: last year’s pancreatic cancer trials) and the Trump administration decided “nah.” That a society could reject a cure for cancer is astounding.
That’s alright. China will develop them instead.
This is so important! And one reason patient advocacy organizations are so vital. In the field of medical research, we help patients navigate the speed bumps of jargon so they understand their disorder or disease. #rarebirdsfoundation #raredisease
Thanks for your feedback.
You’ve proved my point.
Money isn’t real until you’re in line at the grocery store.
Ok
A $70k truck is, in fact, a very extravagant purchase. The issue is not just what we buy, but how we buy it. The worst thing boomers did for us is normalize credit card debt.
And there are very few Americans that are ready to take personal accountability for their financial decisions, it seems.
Guess who’s next?
Thank you! Calling out the evasions…why is that so hard for most interviewers?
Would make an excellent pickle ball court
That smile 💜💜💜
I recently went on a Disability Moms adventure retreat with 50 badass women. Someone hacked a bunch of our credit cards. They have no idea who they’re dealing with… we solved that shit in 20 minutes.
May we all remember that she also assaulted women and girls
Twice…so far
Brilliant
I’m not sure I would eat something that someone was forced to sell me. 😬
Brilliant
I’m no expert on any of this but my thought as a mom has been “if you can’t play nicely together with the Holy Land, then neither of you get it.” This seems like “I’ll let your brother Egypt play with it instead.”
I want to feel bad for these victims because I do believe they got tricked, but I just can’t.
Woah! Weird ad. Foot on the face? But I see what you mean.
Aw man. My friend designed this campaign. She is not a eugenecist.
And yet we press on! ✊
@ohnovelty.bsky.social
“Help” 🙄
Yep. Raising 3 to 4 Million dollars for even the *chance* of a treatment is a lotta bake sales.
Ooh, what did they say? 😬
I hope Russel Vought is having a nice day with his daughter, who received an NIH developed treatment for her cystic fibrosis. I am cuddling my daughter after her third seizure of the day… #russellvought #nih #ADSLDeficiency
These kids mean everything to me. Thank you for the repost.
This is going to disproportionately affect children with complex Medical needs and disabilities, of course.
This is so important. Most people dont realize almost our entire knowledge of the human genome was based on caucasians. Also, applause for using the D word.
It’s been funny to me that FDA/NIH is talking about AI Drug Discovery as a new thing, when Chinese scientists have been patenting drugs for novel uses based on computer modeling for years. That race is over and the US didn’t even medal.
…a therapy that your kids might be lucky enough to trial, but that might not work. And of course, the therapy might also not work to the point of making things worse or in this case, might end their life. It’s impossible, but we press on.
This has been really heartbreaking and sobering to follow as we have an AAV9 therapy in the works for ADSL Deficiency. As a parent of kids with rare disease, the lift is astronomical: not only raise the kids with complex needs but participate in research and raise millions of dollars for 1/2
Thank you!
Maybe, maybe not? It’s a question worth consideration
Fuck. No.
Both things can happen, but with declining resources for science and medical research broadly…helping suffering humans that are already on Earth seems logical
Every day, the 47th POTUS gets on stage and performs THE WORST rendition of Shaggy’s smash hit “It Wasn’t Me” humanly possible.
I’m biased, but I would like to see emphasis put on helping people who are already sick from severe genetic disorders. We can do designers babies later (preferably after I’m dead.) #ADSLDeficiency
“This is interesting to the point of being spooky.” The opening line from an email from a researcher who collaborates with us at Rare Birds Foundation. Rigorous science 🤝 Mother’s Intuition
That’s an episode of Maury Povich I’d love to see.
Prefect timing since they gutted Medicaid and will be sending those “able bodied” people to work in the fields to replace migrant labor. 😫 So hard not to despair.
Parents of children with rare diseases are charged with raising the child and also CURING THE DISEASE. What my brothers and sisters in arms are doing is nothing short of heroic. Thanks to my kids Jonah and Flora for showing me what ‘brave’ really is. #ADSLDeficiency
Not at all! We are an NIH family and I am thankful you are keeping pressure on. It means a lot.
Keep going. We need you.
What in the Bed Bath and Beyond is going on at Round Table Pizza? $55 for an X Large pie means I’m gonna need a 20% off mailer to pull that off.
I haven’t missed shopping at Target as much as I thought I might!
Waaait wait wait. You’re telling us it took him 60 seconds to kell himself? And those 60 seconds happen to align with the 60 seconds of a *Scheduled nightly break in taping? Something’s fishier than POTUS’ diaper after this meeting…
