A buddy once asked me to help him shave a mullet before we drove down to Iowa for a Gopher-Hawkeyes game. Never having done this before, I accidentally shaved off the majority of one sideburn.
We did have the wherewithal to make them match, much to my friend's regret.
Matt! This is fantastic news! Congratulations!
Omfg.
Omfg.
It was postponed. I’m still giving it tomorrow at the same time I was supposed to. It will be streaming on YouTube here at 2:30pm eastern.
Would love to have you join us!
youtube.com/@myositisass...
Here’s your action item for today.
Click this link and it will populate a pre-addressed, pre-written email to FOX, Shopify, the NFL and the FCC, demanding accountability for Kanye West’s Super Bowl commercial.
Tinyurl.com/kanyesuperbowlad
During President Donald Trump’s first term, the Education Department held DEI training.
Now, in the opening days of Trump’s second term, dozens of employees who attended that diversity program have been placed on leave because of it.
In 2 weeks, I head to DC for Rare Disease Week. I'll spent one day on Capitol Hill before heading to the NIH campus where I'm set to speak on Rare Disease Day.
I feel ill-prepared. Like, I don't even know where to begin. And by then, it could all be worse. #rarediseasemonth
sreenshot from the new york times reporting that Stanford University’s provost is talking about how the loss of funding from national institutes of health funding will cost the university $160 million. that’s not the way to get this changed — the people think “stanford is rich; no big deal.” leaders need to talk about what this will cost the public
for pity’s sake, I am BEGGING university leaders to stop framing this issue in terms of what this will cost the university. people dont care!
EXPLAIN WHAT THIS WILL COST THE PUBLIC: closed hospitals and clinics, skipped treatments, loss of access to experimental drugs, unemployment, recession
not paying indirect costs for research is like only paying the players in the Super Bowl.
can't have a Super Bowl without coaches, referees, security, janitors, announcers, stadium staff, and a stadium - and you can't have research without supporting people and facilities
Remember when we stayed in the Airbnb and John was the only non-ADHDer? 🤣🤣🤣🤣
Like many rare diseases, DM and Antisynthetase Syndrome symptoms vary by patient.
For me, it predominantly affects my muscles, lungs and skin and in the less than 2 years since I was diagnosed, I’ve had 350+ appointments and procedures to treat this chronic illness.
It’s a full-time job.
It’s Rare Disease Month! Let me tell you about mine!
It’s called Dermatomyositis associated with Antisynthetase Syndrome and the NIH estimates that less than 50,000 people in the US have it.
I always wanted to be special. 🤣
#raredisease
Shared some great insights on how you can ACTUALLY be impactful rn that came across my desk today. On my Substack (free, duh) because it’s too long for here. Thanks for being the resistance. Really.
open.substack.com/pub/leslielo...
I got you!
I use Siri and I say, “read me all my unread text messages”. Works amazing when I’m driving or when I’m going for a walk or a workout.
Obviously, if I’ve read them already, I have to go back and make a point to respond. But this is a huge help for me.
If you haven’t read “The Day The World Came To Town” by Jim DeFede, I can’t recommend it enough. Beautifully done.
I was invited by the FDA and the NIH to speak at Rare Disease Day next month.
If that doesn’t happen, I’m still going to give my speech. I will stream it and I expect you all to come.
Thank you for covering this. Not a researcher but a rare disease patient who relies on their work.
I heard a rumor this place is like old-school Twitter.
Take me back to the Good Old Days, bluesky. 💙
#newhere 👋👋👋