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Peter Morley ♿️ @petermorley.bsky.social · 14d

🔥PLEASE REPOST🔥

🚨If ACA tax credits are NOT extended, premium payments will increase by more than 100% for many of the 24M Americans who buy their own coverage & it's on top of rising food & housing costs among other inflationary pressures that are adding major STRESS.🚨

www.kff.org/from-drew-al...

How an ACA Premium Spike Will Affect Family Budgets, and Voters

In his latest column, President and CEO Dr. Drew Altman shows how spiking premiums, which may come if the enhanced ACA tax credits are not extended, will hit people in the context of their family budg...

www.kff.org

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Eric Topol @erictopol.bsky.social · 22d

This is why gutting support for mRNA will compromise such remarkable progress vs autoimmune diseases
And cancer
And genome editing for rare disease

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Eric Topol @erictopol.bsky.social · 27d

"We will never know what diseases might have been cured or what advances in technology might have been invented had the lights not gone out in the labs."
www.nytimes.com/2025/09/08/o...

Opinion | We Are Watching a Scientific Superpower Destroy Itself

www.nytimes.com

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Audrey Vernick @audreyvernick.bsky.social · 27d

Thank you @michaelgranovetter.bsky.social for your interest in this population and moving this research forward!

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Epilepsia Journal @epilepsiajournal.bsky.social · Aug 25

Child cognition, behavior, and treatment complexity are key predictors of parental stress, beyond seizure-related factors alone.
doi.org/10.1111/epi....

#epilepsy #epilepsia #ILAE #behavioralproblems #caregiverburden #cognitiveimpairment #drugresistant #parentingstress #pediatric

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AGBT @agbt.bsky.social · 29d

At #AGBTPH25, @hcmefford.bsky.social of @stjuderesearch.bsky.social shared how gene replacement and antisense therapies are advancing treatments for rare pediatric epilepsies and neurological diseases — bringing new hope to patients and families.

#PrecisionHealth #Genomics #RareDisease #Epilepsy

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Epilepsia Journal @epilepsiajournal.bsky.social · 28d

Awake craniotomy appears feasible and safe in patients with medically drug-resistant focal epilepsy.
doi.org/10.1111/epi....

#epilepsy #ILAE #epilepsia #awakesurgery #drugresistantfocalepilepsy #feasibility #safety

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Epilepsia Open @epilepsia-open.bsky.social · 28d

This study assessed neurologists' practices and barriers to epilepsy genetic testing/counseling compared to guidelines published in 2022.
doi.org/10.1002/epi4...

#epilepsy #ILAE #epilepsiaopen #adultneurologists #bestpractices #genomics #unexplainedepilepsy

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ProPublica @propublica.org · 28d

Citing concerns about DEI, the Department of Education has halted funding for programs that support students with combined hearing and vision loss in eight states.

“How low can you go?” one advocate asked. “How can you do this to children?”

By @jodiscohen.bsky.social @jsmithrichards.bsky.social

Programs for Students With Hearing and Vision Loss Harmed by Trump’s Anti-Diversity Push

Citing concerns about DEI, the U.S. Department of Education has halted funding for programs that support students with combined hearing and vision loss in eight states. “How low can you go?” one advoc...

www.propublica.org

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Charles Ornstein @charlesornstein.bsky.social · Sep 10

"How low can you go?"
"How can you do this to children?"

Education Dept. Halts Funds to Programs for Deafblind Students Over DEI Concerns, by @jodiscohen.bsky.social @jsmithrichards.bsky.social

Programs for Students With Hearing and Vision Loss Harmed by Trump’s Anti-Diversity Push

Citing concerns about DEI, the U.S. Department of Education has halted funding for programs that support students with combined hearing and vision loss in eight states. “How low can you go?” one advoc...

www.propublica.org

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Mother Jones @motherjones.com · Sep 1

Few OB-GYNs get disability training—and their disabled patients are far likelier to die.

Pregnancy is a minefield when you're disabled

Few OB-GYNs get disability training—and their disabled patients are far likelier to die.

www.motherjones.com

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Heather Cox Richardson (TDPR) @hcrichardson.bsky.social · Aug 20

An idea:

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Columbus - Feeds @columbus.tomkahe.com.ap.brid.gy · Aug 16

These parents don't only fear the death of their child. They fear dying first. - Madeline Mitchell

These parents don't only fear the death of their child. They fear dying first.

Danny Groff is 39 and needs 24/7 care. His parents, both 66 and retired educators, are planning for what happens if they die before he does.

www.usatoday.com

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Epilepsia Journal @epilepsiajournal.bsky.social · Aug 13

Findings support earlier surgical referral and long-term risk stratification in drug-resistant epilepsy.
doi.org/10.1111/epi....

#epilepsy #epilepsia #ILAE #mortality #SUDEP #surgery #survival

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HealthDay @healthday.bsky.social · Aug 14

An under-the-scalp implant can improve monitoring of a person’s #epilepsy, giving doctors data they need to improve control over seizures, a new pilot study says.
www.healthday.com/health-news/...

Scalp Implant Improves Real-World Epilepsy Tracking

THURSDAY, Aug. 14, 2025 (HealthDay News) — An under-the-scalp implant can improve monitoring of a person’s epilepsy, giving doctors data they need to improve co

www.healthday.com

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Mark Jacob @markjacob.bsky.social · Aug 12

Some day explorers from another galaxy will happen upon Earth and sift through the bizarre wreckage. In whatever language they use, one will say to another: “Amazing. These creatures did something called ‘voting,’ and 77 million of them voted to destroy themselves and everyone else on the planet.”

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Epilepsia Journal @epilepsiajournal.bsky.social · Aug 1

Overall, 55.4% of patients with LGS achieved ≥50% seizure reduction with neuromodulation therapies.
doi.org/10.1111/epi....

#epilepsy #Epilepsia #ILAE #adverseeffects #DEE #drugresistant #neurostimulation #qualityoflife #treatment

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shauna @goldengateblond.bsky.social · Jul 27

everything is terrible so here's the Muppets channeling the Beastie Boys

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Christopher Webb @cwebbonline.com · Jul 26

Today’s the anniversary of the Americans with Disabilities Act—but the fight for access, dignity, and justice didn’t start in 1990, and it sure as hell didn’t end there.

Anyone can become disabled at any time. So saving Medicaid is survival. For all of us.
#SaveMedicaidSaveFamilies

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Kelly @broadwaybabyto.bsky.social · Jul 25

Disability is not a moral failing

It’s not something a person chooses, nor can they “try harder” out of it

Most of us will experience disability at some point in our lives

You can be born disabled, it can happen suddenly due to accident or illness or be the result of aging

It’s a part of life

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Audrey Vernick @audreyvernick.bsky.social · Jul 17

This is horrifying.

WIRED @wired.com · Jul 17

ICE officials will be receiving access to the personal data of nearly 80 million people on Medicaid in order to acquire "information concerning the identification and location of aliens in the United States,” according to an agreement viewed by WIRED.