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Jeremy Pomeroy

@movemoresitless.bsky.social
100 followers 276 following 39 posts

Behavioral epidemiologist and rare disease researcher. PI of largest international registry of people with #bardetbiedlsyndrome

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Jeremy Pomeroy @movemoresitless.bsky.social · 23/05/2026
An updated diagnostic algorithm of the rare #ciliopathy #bardetbiedlsyndrome #raredisease onlinelibrary.wiley.com/doi/full/10....
onlinelibrary.wiley.com
Streamlining Diagnosis of Bardet–Biedl Syndrome: New Diagnostic Algorithm With Updated Criteria
Considerable advances have been made in our understanding of Bardet–Biedl syndrome (BBS), particularly in its core clinical features and molecular genetics, warranting an update to the existing diagn...
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The Associated Press @apnews.com · 12/03/2026
Lyft has agreed to protect the rights of blind and disabled riders to travel with service animals under a Minnesota settlement that applies nationwide.
bit.ly
A service dog named Alfred sparked a Lyft settlement in Minnesota with nationwide reach
Lyft has agreed to protect the rights of blind and disabled riders to travel with service animals under a Minnesota settlement that applies nationwide.
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Jeremy Pomeroy @movemoresitless.bsky.social · 18/02/2026
#medsky #raredisease #bardetbiedlsyndrome
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Jeremy Pomeroy @movemoresitless.bsky.social · 18/02/2026
Very pleased to see this published online. Clinical Registry Investigating Bardet Biedl Syndrome used to create external natural history cohort as comparator to clinical trial cohort. Demonstrates one of the many important benefits of natural history cohorts onlinelibrary.wiley.com/doi/10.1002/...
onlinelibrary.wiley.com
Setmelanotide in Bardet‐Biedl Syndrome: A 52‐Week Comparison of Phase 3 Trial Participants With a Matched Registry Cohort
Objective This analysis aimed to assess the efficacy of setmelanotide over 52 weeks in patients with Bardet-Biedl syndrome (BBS) compared with an external natural history cohort from the internation...
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Reuters @reuters.com · 09/02/2026
AI no better than other methods for patients seeking medical advice, study shows reut.rs/3My1cvN
reut.rs
AI no better than other methods for patients seeking medical advice, study shows
Asking AI about medical symptoms does not help patients make better decisions about their health than other methods, such as a standard internet search, according to a new study published in Nature Medicine.
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Jeremy Pomeroy @movemoresitless.bsky.social · 06/02/2026
I will think of Ms West with gratitude when I ski, bike, run, or any of the other many activities that are more enjoyable thanks to her work.
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ProPublica @propublica.org · 06/02/2026
#ICYMI: Our Rx Inspector tool allows you to use information from your prescription label to locate the factory where a generic drug was made and see if the plant has a history of inspection violations. Explore the tool:
projects.propublica.org
Where Was My Generic Prescription Drug Made? - Rx Inspector - ProPublica
The FDA won’t tell Americans where their generic drugs are made, so ProPublica did it instead. Use information on your prescription label to locate the factory and see inspection reports.
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Stand Up for Science! @standupforscience.net · 24/01/2026
This is Alex Pretti. This morning he was murdered by ICE. Six ICE agents held him down and shot him at point blank range. Alex was a nurse and researcher at the VA. Our thoughts are with his loved ones and we stand united in action calling for the abolishment of ICE. #ScientistsAgainstICE
Alex Pretti, wearing a green sweater with his VA badge on.
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ProPublica @propublica.org · 23/01/2026
NEW: Rx Inspector, our free, searchable tool, allows you to look up where your generic prescription drug was made. From patients and doctors to researchers, it is already reshaping how people make decisions. “This is a godsend,” one professor told us.
propublica.org
“A Godsend”: ProPublica’s Rx Inspector Tool Is Helping People Find Critical Safety Information on Generic Drugs
Health care workers are changing how they counsel patients. Experts are using our database to support their research. And some consumers report they’ve discovered troubling records at the factories wh...
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Jeremy Pomeroy @movemoresitless.bsky.social · 16/01/2026
Falling snow timeline cleanse
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Jeremy Pomeroy @movemoresitless.bsky.social · 16/01/2026
Orange cat timeline cleanse
An orange cat curled up like a shrimp sleeping peacefully
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The Conversation U.S. @us.theconversation.com · 21/11/2025
Relying on ChatGPT to teach you about a topic leaves you with shallower knowledge than Googling and reading about it, according to new research that compared what more than 10,000 people knew after using one method or the other. Shared by @gizmodo.com: buff.ly/yAAHtHq
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Jeremy Pomeroy @movemoresitless.bsky.social · 12/11/2025
The Northern Lights are putting on quite a show tonight
A picture of the night sky showing a red band of the Northern Lights
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The Conversation U.S. @us.theconversation.com · 23/09/2025
Are you with us in the battle against misinformation? If so, we’d appreciate your support. Just this week, we’ve explained the importance and safety of vaccines… 🧵 buff.ly/cRsOxNT 🩺 🧪 #VaccinesWork
theconversation.com
Hepatitis B shot for newborns has nearly eliminated childhood infections with this virus in the US
Before universal vaccination for hepatitis B began in 1991, 18,000 children contracted the virus by age 10 each year, and most of them developed chronic illness and liver damage. Vaccination reduced…
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ProPublica @propublica.org · 24/09/2025
NEW: GOP lawmakers cite Georgia’s Pathways to Coverage as a national model for federal Medicaid work requirements that are set to take effect in 2027. A new report shows the program has spent twice as much on administrative costs as on health care. By @savmargaret.bsky.social
propublica.org
Georgia’s Medicaid Work Requirement Program Spent Twice as Much on Administrative Costs as on Health Care, GAO Says
Republican lawmakers cite Georgia’s Pathways to Coverage as a national model for federal Medicaid work requirements that are set to take effect in 2027. A new report shows the program has spent at lea...
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Jeremy Pomeroy @movemoresitless.bsky.social · 07/04/2025
I am grateful for the opportunity to chat with Dr Stephen Johnston from A Race Against Blindness youtu.be/XUZMrMG4WKg?... #raredisease #medsky #bardetbiedlsyndrome
youtu.be
Multispecialty care for BBS @ the Marshfield Clinic BBS Center of Excellence with Dr. Jeremy Pomeroy
YouTube video by A Race Against Blindness - Nonprofit Organization
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Jeremy Pomeroy @movemoresitless.bsky.social · 07/04/2025
I am grateful for the opportunity to chat with Dr Stephen Johnston from A Race Against Blindness youtu.be/XUZMrMG4WKg?... #raredisease #medsky #bardetbiedlsyndrome
youtu.be
Multispecialty care for BBS @ the Marshfield Clinic BBS Center of Excellence with Dr. Jeremy Pomeroy
YouTube video by A Race Against Blindness - Nonprofit Organization
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The Guardian @theguardian.com · 09/04/2025
We are witnessing the destruction of science in America | Paul Darren Bieniasz
theguardian.com
We are witnessing the destruction of science in America | Paul Darren Bieniasz
If we stay on this administration’s course, future life-saving medicines may never be invented
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Joshua Weitz @joshuasweitz.bsky.social · 28/03/2025
Working with an interdisciplinary team, we have developed a website to communicate how the White House's proposed cuts to health research would cause losses of $16B and 68,500 jobs. Find out how your community may be impacted. Explore more at SCIMaP: scienceimpacts.org a 🧵
US map via scienceimpacts.org visualization of economic loss due to IDC cuts to 15% as part of Feb 7, 2025 executive order, with shading denoting intensity of cuts.
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Mark Cuban @mcuban.bsky.social · 22/03/2025
From 2010 to 2016 (latest data I have ), NIH research contributed to EVERY drug approved by the FDA
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Alex Knapp @thealexknapp.bsky.social · 05/03/2025
My latest - gene therapy company MeiraGTx has restored sight to 11 children born with a rare genetic disorder that causes blindness. www.forbes.com/sites/alexkn...
forbes.com
This Founder’s Gene Therapy Company Helped Blind Kids See Again
Zandy Forbes’ biotech company MeiraGTx has developed targeted gene therapy methods to treat more than just genetic disorders. Now it’s on the cusp of its first approval.
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Judd Legum @juddlegum.bsky.social · 03/03/2025
1. The Trump administration has crippled cancer and Alzheimer's research by imposing a freeze on all government credit cards at NIH. An NIH source with direct knowledge tell Popular Information that scientific research has ground to halt because necessary supplies can no longer be purchased.
popular.info
Trump credit card freeze crippling cancer and Alzheimer's research
On February 26, President Trump issued an executive order expanding the power of the United States DOGE Service (DOGE), the government initiative controlled by Elon Musk.
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Alt CDC (they/them) @altcdc.altgov.info · 03/03/2025
Are you an HHS employee struggling with your 5 bullets? We applaud the hero that created this site, where you can input your occupation (title or job series both work) and it generates 5 bullets for you. www.opmreply.com
opmreply.com
OPM Reply
Automate response to OPM emails
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Sam Wang @samwang.bsky.social · 03/03/2025
Just finished the renewal for my NIH grant, which has funded my work for 23 years. We'll follow through on exciting threads, including a possible link between autism spectrum disorder and sensation/movement. Barring a collapse in the federal government and U.S. science, it's ready to submit. uh oh
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Emily Mullin @emilymullin.bsky.social · 03/03/2025
I cover health and biotech at WIRED, and I'm looking to speak with employees at federal labs whose work is being affected by the credit card freeze. You can reach me securely on Signal at emullin.06. I can honor requests for anonymity.
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Jeremy Pomeroy @movemoresitless.bsky.social · 02/03/2025
As a former IRTA fellow I am grateful that I had to work at the NIDDK/NIH with scientists like Francis Collins. #NIH #medsky #science
Image of quote reading NIH is the largest supporter of biomedical research in the world. It is the main piston of a biomedical engine that is the envy of the globe. Yet it is not a household name. It should be.
When you hear about patients surviving stage 4 cancer because of immunotherapy, that was based on NIH research over many decades. When you hear about sickle-cell disease being cured because of CRISPR gene editing, that was built on many years of research supported by NIH.” - Francis Collins, MD
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Eliot Higgins @eliothiggins.bsky.social · 28/02/2025
Democracies weren’t built around this. They depend on a shared reality, however contested, to function. When governance becomes a battle between competing fictions rather than policy and truth, institutions designed for debate and compromise become tools for enforcing narratives.
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Jeremy Pomeroy @movemoresitless.bsky.social · 28/02/2025
Realistically Trump isn’t going to do anything to benefit people with #raredisease but hopefully at some point there will be opportunities to make the changes necessary to benefit this underserved group. #medsky #fda www.statnews.com/2025/02/28/t...
statnews.com
To fight for those with rare diseases, Trump must reform and modernize the FDA thoughtfully
“With the right policies, advanced science, and strong leadership in government agencies, Donald Trump has the power to save more American lives from rare diseases than any president in history,” writ...
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The Conversation U.S. @us.theconversation.com · 27/02/2025
Accommodations designed for people with #disabilities often benefit everyone. Examples include captioning, visual instructions, and remote work options, according to a professor of disability studies: buff.ly/4h1lVl5 Lauren Shallish, Rutgers - Newark #ADA #DEI #workplace #universaldesign
buff.ly
Why including people with disabilities in the workforce and higher education benefits everyone
For one thing, the presence of employees with disabilities improves the culture of the entire organization, making it more collaborative and responsive.
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Jeremy Pomeroy @movemoresitless.bsky.social · 27/02/2025
I am absolutely gutted. During my time in the Intramural Program at NIDDK I had the opportunity to mentor 5 SIP interns including interns through the Office of Minority Health Research. It made me a better scientist and these students often went on to make underserved communities less underserved
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The Conversation U.S. @us.theconversation.com · 26/02/2025
Trump administration policies could create new barriers for disabled Americans in employment, education, and health care. Changes to federal programs may impact the whole 20-25% of the population with disabilities. buff.ly/3EZBLzd @matthewborus.bsky.social, Binghamton University
buff.ly
Cutting Medicaid and federal programs are among 4 key Trump administration policy changes that could make life harder for disabled people
Tracking disability policies has long been challenging − this will become a harder task under the Trump administration.
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AltFormerFed (aka Farmer Fred) @dataprism.altgov.info · 26/02/2025
Yo Feds! The trauma is real. It’s not your fault. Take care of yourself & your peeps. Go for a walk. Get in a different headspace. We see you out there, we need you out there, & we love you & value your important work. If you are in crisis, please reach out & #resist the doubt and despair.
mhanational.org
Suicide Prevention
No suicide attempt should be dismissed or treated lightly.
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Philip Bump @pbump.com · 26/02/2025
what the actual fuck
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Kai Ryssdal @kairyssdal.bsky.social · 20/02/2025
This. Let’s be done with the whole “run government like a business” bs, shall we?
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Elizabeth Jacobs, PhD @elizabethjacobs.bsky.social · 20/02/2025
Bobby Whalen is a man with autism who had a job sterilizing surgical instruments at NIH. He was apparently quite good at it, but he just lost his job because of Musk’s hatchet job. www.nbcwashington.com/news/local/f...
nbcwashington.com
‘Disappointing': Fired NIH worker trained others hired in disability inclusion program
D.C. resident Bobby Whalen was a proud probationary employee of the National Institutes of Health. He lost his job Friday night along with what is believed to be more than 1,000 other NIH probationary...
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Ben @thatwasnifty.bsky.social · 20/02/2025
To say nothing of intramural research. So many rare diseases under investigation bc NIH is the only option, pharma isn't interested. And the NIH hospital announced today their clinical labs will have long turnaround times and they won't even do certain tests anymore bc they lost the staff.
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Alt NIH Bluesky 🧪 @altnih4science.bsky.social · 19/02/2025
Important article. This center was taking new approaches to studying Alzheimer’s and other dementias. Everyone who knows someone with dementia is being hurt by Trump’s cuts to medical research. 🧪
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Michael Tippett 🎃 @mktippett.bsky.social · 18/02/2025
They sort of liked the sound of reduced administrative costs. I used the analogy of going to a restaurant and expecting to pay only the price of ingredients.
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Avery @averypickford.bsky.social · 18/02/2025
I actually don't think every single parent in America recognizes this...I still think a lot of parents are more worried about their kids being pulled into a van vs run over by a van.
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Mark Hertling @markhertling.bsky.social · 18/02/2025
Because the military isn’t the police arm of the nation. Any nation that relies on soldiers & guns to solve their political issues isn’t a democracy. The majority of those voting selected him, which requires the courts, congress and electorate to check his actions.
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The Conversation U.S. @us.theconversation.com · 17/02/2025
Cutting funding for science can have consequences for the economy, US technological competitiveness
buff.ly
Cutting funding for science can have consequences for the economy, US technological competitiveness
The jury’s out on whether the US is still at the top of global science. Proposed cuts to major agencies could mean completely ceding that title.
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Jeremy Pomeroy @movemoresitless.bsky.social · 16/02/2025
Happy Birkie Week to all who observe www.birkie.com/ski/birkie-w...
birkie.com
Birkie Week Events – American Birkebeiner
Birkie Week Events February 19 – 23, 2025 Cable-Hayward, WI, USA Welcome to the North Woods and the 2025 Birkie Week of Events! From its humble beginnings, the
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Alt NIH Bluesky 🧪 @altnih4science.bsky.social · 15/02/2025
Thank you! There is a simple thing to do: You can call up your local newspaper and TV station and offer to talk about what is happening.
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Alt NIH Bluesky 🧪 @altnih4science.bsky.social · 14/02/2025
It’s been buried in all the news today, but every scientist in the US should pay attention to this: Mike Lauer went out on a limb for us all, sending out a memo saying institutes should start awarding grants. And it looks like Trump/Musk fired him for that. 🧪
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Jeremy Pomeroy @movemoresitless.bsky.social · 14/02/2025
This hits close to home. I was a predoc and postdoc IRTA at the NIDDK. The training was instrumental in my career. I also was a mentor to postbac IRTAs. The Musk/Trump harm to medicine and science will last at least a generation. #NIH #medsky #standupforscience www.statnews.com/2025/02/14/f...
statnews.com
Trump administration to fire thousands at health agencies
The Trump administration is set to eliminate thousands of federal health care jobs Friday, targeting employees across agencies who were hired in the past one to two years.
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Ben Wikler @benwikler.bsky.social · 14/02/2025
The Consumer Financial Protection Bureau protects regular folks against corporate special interests trying to rip them off. Which has made it, naturally, a target for Musk, MAGA, and now Russell Vought. But their strategy to gut it suggests a way to fight back. 🧵
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Gravel Influencer @gravelinfluencer.bsky.social · 14/02/2025
This comment on r/fednews really stood out to me. Trump and Musk want people to think they're firing do-nothing "bureaucrats," but they're really getting rid of people dedicated to serving this country and keeping it operational. I hope these stories get told.
I lost my job. USDA Forest Service.


My probation was up next week.


I did everything right. I took a GS-7 role with a master’s degree just to get my foot in the door. I spent years doing seasonal fieldwork for low pay, working in remote places, gaining experience, and building skills, just for a chance at a permanent position. I was about to be a GS-9. I wrote NEPA reports. I conducted field surveys. I worked fire support. I dedicated myself to this work because I believed in it.


Public lands don’t manage themselves. The wildlife, watersheds, and forests we protect don’t just stay protected without people on the ground making it happen. My coworkers and I took on that responsibility, often in places most people never think about but that matter more than they know.


And now? Just like that, I’m out.


Edit: I’ve consistently supported progressive policies and have voted Democrat in every national and local election since I was 18. I do appreciate folks asking, I have some coworker having a serious 'leopards ate my face' moment right now.
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Jeremy Pomeroy @movemoresitless.bsky.social · 14/02/2025
This from @altnps.bsky.social is spot on
A drawing of Smokey the Bear with the words “Only you can prevent forest fires” with the words “Seriously. We’ve been defunded. It’s just you now.”
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SassyMetisChick @sassymetischick.bsky.social · 14/02/2025
The Indigenous People of North America have decided to go back to calling the Gulf of Mexico, “Chalchiuhtlicueyecatl”. It is what the Nahuatl People originally called it as it is the domain of the goddess Chalchiuhtlicue, who is assoc w/water bodies, including the Gulf of Mexico.
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