Love to be recovering from two recent neurosurgeries abandoned by @americanair.bsky.social accessibility transit service at two gates for over 4 hours after 4 transit requests because disabled passengers don’t matter to American Airlines! Gonna pass out in front of boarding flights I guess
February 17, 2025 at 1:11 AM
Love to be recovering from two recent neurosurgeries abandoned by @americanair.bsky.social accessibility transit service at two gates for over 4 hours after 4 transit requests because disabled passengers don’t matter to American Airlines! Gonna pass out in front of boarding flights I guess
As a Canadian, i've had three surgeries in the past 10yrs, two neurosurgeries and an ear surgery that MY TAXES have paid for. Not a penny more!
It's called public healthcare.
Thank you 🇨🇦
It's called public healthcare.
Thank you 🇨🇦
January 14, 2025 at 3:27 PM
As a Canadian, i've had three surgeries in the past 10yrs, two neurosurgeries and an ear surgery that MY TAXES have paid for. Not a penny more!
It's called public healthcare.
Thank you 🇨🇦
It's called public healthcare.
Thank you 🇨🇦
Alan Levinovitz implied these are neurosurgeries for EDS, long Covid and MECFS even after myself and others told him this is incorrect, these are conditions that impact/are impacted by *brain and spine conditions* which is what the neurosurgeries treat
Please retract and drop this bad actor
Please retract and drop this bad actor
June 10, 2026 at 7:38 PM
Alan Levinovitz implied these are neurosurgeries for EDS, long Covid and MECFS even after myself and others told him this is incorrect, these are conditions that impact/are impacted by *brain and spine conditions* which is what the neurosurgeries treat
Please retract and drop this bad actor
Please retract and drop this bad actor
Also, I love your banner! 🙌🏽
This is my “Critter,” aka the Kranio Kid! (Named for craniosynostosis; he’s had 3 neurosurgeries.)
He’s outgrown his costume, but he used to show up to the hospital in full superhero regalia to visit the other kids before pre-op. 🦸🏻♂️♿️✨
Surgery #42 on the horizon.
This is my “Critter,” aka the Kranio Kid! (Named for craniosynostosis; he’s had 3 neurosurgeries.)
He’s outgrown his costume, but he used to show up to the hospital in full superhero regalia to visit the other kids before pre-op. 🦸🏻♂️♿️✨
Surgery #42 on the horizon.
January 22, 2025 at 5:28 PM
Also, I love your banner! 🙌🏽
This is my “Critter,” aka the Kranio Kid! (Named for craniosynostosis; he’s had 3 neurosurgeries.)
He’s outgrown his costume, but he used to show up to the hospital in full superhero regalia to visit the other kids before pre-op. 🦸🏻♂️♿️✨
Surgery #42 on the horizon.
This is my “Critter,” aka the Kranio Kid! (Named for craniosynostosis; he’s had 3 neurosurgeries.)
He’s outgrown his costume, but he used to show up to the hospital in full superhero regalia to visit the other kids before pre-op. 🦸🏻♂️♿️✨
Surgery #42 on the horizon.
The brain itself does not feel pain because it lacks pain receptors, allowing certain neurosurgeries to be performed while patients remain awake.
December 26, 2025 at 5:58 AM
The brain itself does not feel pain because it lacks pain receptors, allowing certain neurosurgeries to be performed while patients remain awake.
🚨 Emily has gone through an inaccessible, ableist nightmare trying to get home after multiple major freakin’ neurosurgeries:
Please help with boosts, and with any donation you can spare to share!
Please help with boosts, and with any donation you can spare to share!
Had a focal seizure last night that settled down after getting settled at hotel, took hours for me to recover
American Airlines offered us travel vouchers but a medical org covers my medical flights — no hotel, food or cab vouchers
Please share if you can’t donate www.gofundme.com/f/help-emily...
American Airlines offered us travel vouchers but a medical org covers my medical flights — no hotel, food or cab vouchers
Please share if you can’t donate www.gofundme.com/f/help-emily...
Donate to We've got your back! Help Emily get spinal care, organized by Jessica Smolinski
*PLEASE SHARE even if you can't donate*
Hello everyone!
This fu… Jessica Smolinski needs your support for We've got your back! Help Emily get spinal care
www.gofundme.com
February 17, 2025 at 8:35 PM
🚨 Emily has gone through an inaccessible, ableist nightmare trying to get home after multiple major freakin’ neurosurgeries:
Please help with boosts, and with any donation you can spare to share!
Please help with boosts, and with any donation you can spare to share!
Some of this may improve with further neurosurgeries should I be found eligible, but some of it may not
If you see me unmasked, just know it’s not something I feel safe doing, I’m doing it unless I must, that I’m one of those disabled people stuck between bad options
Thank you
If you see me unmasked, just know it’s not something I feel safe doing, I’m doing it unless I must, that I’m one of those disabled people stuck between bad options
Thank you
November 18, 2025 at 2:04 AM
Some of this may improve with further neurosurgeries should I be found eligible, but some of it may not
If you see me unmasked, just know it’s not something I feel safe doing, I’m doing it unless I must, that I’m one of those disabled people stuck between bad options
Thank you
If you see me unmasked, just know it’s not something I feel safe doing, I’m doing it unless I must, that I’m one of those disabled people stuck between bad options
Thank you
Two more neurosurgeries next week and still massively below the goal, please share this even if you can’t donate, this is lifesaving medical care I can’t afford by myself, thank you ❤️
Mercy Medical Flights bought my flights to/from for my February neurosurgical trip! I’m still short of the goal (for specialist care, hospital costs, food, rental cars, lodging) for 2-3 trips spanning 4-6 surgeries this year
Please donate and share! Thank you www.gofundme.com/f/help-emily...
Please donate and share! Thank you www.gofundme.com/f/help-emily...
Donate to We've got your back! Help Emily get spinal care, organized by Jessica Smolinski
*PLEASE SHARE even if you can't donate*
Hello everyone!
This fu… Jessica Smolinski needs your support for We've got your back! Help Emily get spinal care
www.gofundme.com
February 8, 2025 at 12:09 AM
Two more neurosurgeries next week and still massively below the goal, please share this even if you can’t donate, this is lifesaving medical care I can’t afford by myself, thank you ❤️
Who denied it, what their specialty/board certification is, and exactly what information they used to make their determination
At least some of the time just asking for this will get your denial reversed, since they’ve figured out it looks real bad when podiatrists deny neurosurgeries or whatever
At least some of the time just asking for this will get your denial reversed, since they’ve figured out it looks real bad when podiatrists deny neurosurgeries or whatever
April 28, 2024 at 2:02 PM
Who denied it, what their specialty/board certification is, and exactly what information they used to make their determination
At least some of the time just asking for this will get your denial reversed, since they’ve figured out it looks real bad when podiatrists deny neurosurgeries or whatever
At least some of the time just asking for this will get your denial reversed, since they’ve figured out it looks real bad when podiatrists deny neurosurgeries or whatever
🕒 When surgery starts could save lives
A study of 16,000+ neurosurgeries found that operations starting later in the day and lasting longer were linked to much higher risks of death or reoperation.
Timing matters, not just duration.
🔗 www.nature.com/articles/s41...
#Surgery #SciComm 🧪
A study of 16,000+ neurosurgeries found that operations starting later in the day and lasting longer were linked to much higher risks of death or reoperation.
Timing matters, not just duration.
🔗 www.nature.com/articles/s41...
#Surgery #SciComm 🧪
The association between the duration of surgery and risks of mortality and unplanned reoperation is modulated by the surgical start time - Scientific Reports
Scientific Reports - The association between the duration of surgery and risks of mortality and unplanned reoperation is modulated by the surgical start time
www.nature.com
August 5, 2025 at 4:51 AM
🕒 When surgery starts could save lives
A study of 16,000+ neurosurgeries found that operations starting later in the day and lasting longer were linked to much higher risks of death or reoperation.
Timing matters, not just duration.
🔗 www.nature.com/articles/s41...
#Surgery #SciComm 🧪
A study of 16,000+ neurosurgeries found that operations starting later in the day and lasting longer were linked to much higher risks of death or reoperation.
Timing matters, not just duration.
🔗 www.nature.com/articles/s41...
#Surgery #SciComm 🧪
It's not even that they're not doctors. Usually they're MDs but licenses have lapsed, or they're podiatrist making decisions about neurosurgeries, and they almost always have lengthy malpractice claims histories.
They take the insurance gig cause they can't affoed insurance to actually practice.
They take the insurance gig cause they can't affoed insurance to actually practice.
December 6, 2024 at 3:26 AM
It's not even that they're not doctors. Usually they're MDs but licenses have lapsed, or they're podiatrist making decisions about neurosurgeries, and they almost always have lengthy malpractice claims histories.
They take the insurance gig cause they can't affoed insurance to actually practice.
They take the insurance gig cause they can't affoed insurance to actually practice.
Emily Johnson has been coming to NYC for years for multiple neurosurgeries. Caregivers travel with her. She cobbles together Medicare, Medicaid, SSDI, financial aid, patient aid and grants. But, they don't cover all costs.
Please give so Emily can continue to pursue a better quality of life. 🙏🏼
Please give so Emily can continue to pursue a better quality of life. 🙏🏼
New update! Please share
3 more neurosurgery tests + 3 other tests in 2-3 weeks plus two specialist appointments with NY doctors
Need all the help I can get, financial aid denied to non-NY residents may leave me unable to afford care/travel to more care
www.gofundme.com/f/help-emily...
3 more neurosurgery tests + 3 other tests in 2-3 weeks plus two specialist appointments with NY doctors
Need all the help I can get, financial aid denied to non-NY residents may leave me unable to afford care/travel to more care
www.gofundme.com/f/help-emily...
Donate to We've got your back! Get Emily spine and brain care, organized by Jess Smolinski
*PLEASE SHARE even if you can't donate*
Hello, everyone! This f… Jess Smolinski needs your support for We've got your back! Get Emily spine and brain care
www.gofundme.com
February 19, 2026 at 8:28 AM
Emily Johnson has been coming to NYC for years for multiple neurosurgeries. Caregivers travel with her. She cobbles together Medicare, Medicaid, SSDI, financial aid, patient aid and grants. But, they don't cover all costs.
Please give so Emily can continue to pursue a better quality of life. 🙏🏼
Please give so Emily can continue to pursue a better quality of life. 🙏🏼
I didn’t have the energy to make #MEAwarenessDay or #EDSAwarenessMonth posts or celebrate my birthday, I was so crashed out this past month
Please consider this my awareness post! There’s a chance I can get out of #SevereME for good if more donations help me get neurosurgeries
Please consider this my awareness post! There’s a chance I can get out of #SevereME for good if more donations help me get neurosurgeries
Neurosurgery update! Please read, donate, share
Good news: I’m approved for 2 more major lifesaving surgeries
Bad news: There’s more physical damage, surgeries are costly & not covered in full by Medicare, I need more donations for this lifesaving care
www.gofundme.com/f/help-emily...
Good news: I’m approved for 2 more major lifesaving surgeries
Bad news: There’s more physical damage, surgeries are costly & not covered in full by Medicare, I need more donations for this lifesaving care
www.gofundme.com/f/help-emily...
Donate to We've got your back! Get Emily spine and brain care, organized by Jess Smolinski
*PLEASE SHARE even if you can't donate*
Hello, everyone! This f… Jess Smolinski needs your support for We've got your back! Get Emily spine and brain care
www.gofundme.com
May 19, 2026 at 6:38 AM
I didn’t have the energy to make #MEAwarenessDay or #EDSAwarenessMonth posts or celebrate my birthday, I was so crashed out this past month
Please consider this my awareness post! There’s a chance I can get out of #SevereME for good if more donations help me get neurosurgeries
Please consider this my awareness post! There’s a chance I can get out of #SevereME for good if more donations help me get neurosurgeries
As an unwell disabled unpaid carer who's had no choice than defer 2 spinal neurosurgeries for 6 months, due to care left down and nobody caring enough to get that addressed to date, this certainly does not surprise me.
Not everything has to be cost effective. Society is about caring too!
However the estimated loss to the economy of sickness is £150bn a year
www.oxera.com/wp-content/u...
And the UK has the highest waiting lists for healthcare in the G20
However the estimated loss to the economy of sickness is £150bn a year
www.oxera.com/wp-content/u...
And the UK has the highest waiting lists for healthcare in the G20
November 5, 2025 at 6:54 AM
As an unwell disabled unpaid carer who's had no choice than defer 2 spinal neurosurgeries for 6 months, due to care left down and nobody caring enough to get that addressed to date, this certainly does not surprise me.
3/4 I am several thousand dollars behind my neurosurgery goal and unable to afford the travel, hotel, flight and medical costs for the 2-3 trips covering 4-6 neurosurgeries I still need bsky.app/profile/emil...
My mom just booked my next neurosurgery trip, I haven’t been able to pay her fully back for my October 2024 trip
I’m facing 4 definite and 2 more possible surgeries, after 3 surgeries in 4 trips this fundraiser already covered
Please share and donate! Ty www.gofundme.com/f/help-emily...
I’m facing 4 definite and 2 more possible surgeries, after 3 surgeries in 4 trips this fundraiser already covered
Please share and donate! Ty www.gofundme.com/f/help-emily...
Donate to We've got your back! Help Emily get spinal care, organized by Jessica Smolinski
*PLEASE SHARE even if you can't donate*
Hello everyone!
This fu… Jessica Smolinski needs your support for We've got your back! Help Emily get spinal care
www.gofundme.com
November 29, 2024 at 10:25 PM
3/4 I am several thousand dollars behind my neurosurgery goal and unable to afford the travel, hotel, flight and medical costs for the 2-3 trips covering 4-6 neurosurgeries I still need bsky.app/profile/emil...
Emily Johnson's neurologic and neuromuscular symptoms are getting worse. At times, @emilyrj.bsky.social is barely able to communicate.
In year 4 of interstate travel for multiple neurosurgeries, her goal is staying alive and getting out of palliative care.
If you can help, it would mean a lot. 🙏🏼
In year 4 of interstate travel for multiple neurosurgeries, her goal is staying alive and getting out of palliative care.
If you can help, it would mean a lot. 🙏🏼
Emily Johnson is such a smart and interesting person. But, she has been felled by severe chronic illness. Next week she'll consult with NYC neurosurgeons hoping to find ways to treat her scary symptoms.
Travel expenses for Emily and a caregiver are very high. Anything you can give would be a boon.
Travel expenses for Emily and a caregiver are very high. Anything you can give would be a boon.
My postponed February neurosurgery trip is next week!
I’ve had worsening neurology and movement disorder symptoms (typically associated with strokes) due to IH/Chiari, local neurology now helping far-away experts
Please give if you can! Thank you www.gofundme.com/f/help-emily...
I’ve had worsening neurology and movement disorder symptoms (typically associated with strokes) due to IH/Chiari, local neurology now helping far-away experts
Please give if you can! Thank you www.gofundme.com/f/help-emily...
April 9, 2026 at 5:59 PM
Emily Johnson's neurologic and neuromuscular symptoms are getting worse. At times, @emilyrj.bsky.social is barely able to communicate.
In year 4 of interstate travel for multiple neurosurgeries, her goal is staying alive and getting out of palliative care.
If you can help, it would mean a lot. 🙏🏼
In year 4 of interstate travel for multiple neurosurgeries, her goal is staying alive and getting out of palliative care.
If you can help, it would mean a lot. 🙏🏼
I’m returning to New York for two more neurosurgeries in June, but Mount Sinai told me a new state law may prohibit me from receiving financial aid — if this happens, I’m can’t afford the care for this trip (or future trips’ care)
Please donate, share regardless www.gofundme.com/f/help-emily...
Please donate, share regardless www.gofundme.com/f/help-emily...
Donate to We've got your back! Help Emily get spinal care, organized by Jessica Smolinski
*PLEASE SHARE even if you can't donate*
Hello everyone!
This fu… Jessica Smolinski needs your support for We've got your back! Help Emily get spinal care
www.gofundme.com
April 18, 2025 at 8:10 AM
I’m returning to New York for two more neurosurgeries in June, but Mount Sinai told me a new state law may prohibit me from receiving financial aid — if this happens, I’m can’t afford the care for this trip (or future trips’ care)
Please donate, share regardless www.gofundme.com/f/help-emily...
Please donate, share regardless www.gofundme.com/f/help-emily...
I’ve been watching old quick bites in between neurosurgeries and there are some real gems in there. Quibi is due for a critical reappraisal
January 17, 2024 at 1:48 AM
I’ve been watching old quick bites in between neurosurgeries and there are some real gems in there. Quibi is due for a critical reappraisal
Emily Johnson has been a fantastic contributor to the chronic illness community for a long time, and it's heartbreaking that she can't access essential neurosurgeries. If you have a few spare bucks to push her closer to her goal, it'd be a good investment.
🚨 Please donate and share! I need neurosurgeries for untreated issues I’ve had since I was a baby, kid, young adult
It’s taken years to be taken seriously and get to the global expert surgeon who is ready to help! Medicare covers 80% but Medicaid covers nothing as it’s out-of-state t.co/E5MRE5ixeX
It’s taken years to be taken seriously and get to the global expert surgeon who is ready to help! Medicare covers 80% but Medicaid covers nothing as it’s out-of-state t.co/E5MRE5ixeX
We've got your back! Help Emily get spinal care, organized by Jessica Smolinski
*PLEASE SHARE even if you can't donate*
Hello everyone!
This f… Jessica Smolinski needs your support for We've got your back! Help Emily get spinal care
t.co
October 23, 2023 at 6:32 PM
Emily Johnson has been a fantastic contributor to the chronic illness community for a long time, and it's heartbreaking that she can't access essential neurosurgeries. If you have a few spare bucks to push her closer to her goal, it'd be a good investment.
A disabled graphic designer, Marketa, made this to help raise donations for my neurosurgical fundraiser! Please boost this post
Next 2 neurosurgeries in are June, with 1-2 more possible neurosurgeries later if I’m lucky and eligible
Donate here: gofundme.com/f/help-emily-get-medical-care
1/2
Next 2 neurosurgeries in are June, with 1-2 more possible neurosurgeries later if I’m lucky and eligible
Donate here: gofundme.com/f/help-emily-get-medical-care
1/2
May 30, 2025 at 10:07 PM
A disabled graphic designer, Marketa, made this to help raise donations for my neurosurgical fundraiser! Please boost this post
Next 2 neurosurgeries in are June, with 1-2 more possible neurosurgeries later if I’m lucky and eligible
Donate here: gofundme.com/f/help-emily-get-medical-care
1/2
Next 2 neurosurgeries in are June, with 1-2 more possible neurosurgeries later if I’m lucky and eligible
Donate here: gofundme.com/f/help-emily-get-medical-care
1/2
Writing a public engagement piece with your new student is a great way to get the PhD started - thanks for all your work on this @lauren-ford.bsky.social Maybe we can pivot your thesis to experimental workplace neurosurgeries ;)
Who else watched Severance and thought it was great? @rachaelelward.bsky.social and I liked it so much we wrote an article for @uk.theconversation.com, thinking about what science might be behind the fictional
Severance procedure. I hope you enjoy reading it as much as we enjoyed writing it!
Severance procedure. I hope you enjoy reading it as much as we enjoyed writing it!
Severance: the real cognitive neuroscience behind the Apple TV+ show’s ‘severance procedure’
Real ‘split brain’ patients have existed since the 1940s.
theconversation.com
January 14, 2025 at 6:38 PM
Writing a public engagement piece with your new student is a great way to get the PhD started - thanks for all your work on this @lauren-ford.bsky.social Maybe we can pivot your thesis to experimental workplace neurosurgeries ;)
Alan just indicated on Twitter that he is critical of EDS/MECFS patients who may need to get neurosurgeries, so be aware
He is calling neurosurgeons who provide surgeries exploitative and labeling the surgeries as dangerous
He has not engaged with any expert sources on this stuff either
He is calling neurosurgeons who provide surgeries exploitative and labeling the surgeries as dangerous
He has not engaged with any expert sources on this stuff either
June 5, 2026 at 3:04 AM
Alan just indicated on Twitter that he is critical of EDS/MECFS patients who may need to get neurosurgeries, so be aware
He is calling neurosurgeons who provide surgeries exploitative and labeling the surgeries as dangerous
He has not engaged with any expert sources on this stuff either
He is calling neurosurgeons who provide surgeries exploitative and labeling the surgeries as dangerous
He has not engaged with any expert sources on this stuff either
I’ve only received a few donations for months — getting nervous about not having the funds to get all of the neurosurgical care I need!
Medicare, SSDI don’t cover it all
I go back to Mount Sinai for two more neurosurgeries in June, please share if you can’t donate www.gofundme.com/f/help-emily...
Medicare, SSDI don’t cover it all
I go back to Mount Sinai for two more neurosurgeries in June, please share if you can’t donate www.gofundme.com/f/help-emily...
Donate to We've got your back! Help Emily get spinal care, organized by Jessica Smolinski
*PLEASE SHARE even if you can't donate*
Hello everyone!
This fu… Jessica Smolinski needs your support for We've got your back! Help Emily get spinal care
www.gofundme.com
May 28, 2025 at 4:57 AM
I’ve only received a few donations for months — getting nervous about not having the funds to get all of the neurosurgical care I need!
Medicare, SSDI don’t cover it all
I go back to Mount Sinai for two more neurosurgeries in June, please share if you can’t donate www.gofundme.com/f/help-emily...
Medicare, SSDI don’t cover it all
I go back to Mount Sinai for two more neurosurgeries in June, please share if you can’t donate www.gofundme.com/f/help-emily...
“Geez 9 neurosurgeries in 2 years is a lot! How the hell do you physically, financially, emotionally cope”
Physically is very hard and I do my best, financially I need help because it’s a lot and Medicare/Medicaid/financial aid isn’t enough, emotionally you donating and sharing would help me lots
Physically is very hard and I do my best, financially I need help because it’s a lot and Medicare/Medicaid/financial aid isn’t enough, emotionally you donating and sharing would help me lots
November 12, 2024 at 6:13 AM
“Geez 9 neurosurgeries in 2 years is a lot! How the hell do you physically, financially, emotionally cope”
Physically is very hard and I do my best, financially I need help because it’s a lot and Medicare/Medicaid/financial aid isn’t enough, emotionally you donating and sharing would help me lots
Physically is very hard and I do my best, financially I need help because it’s a lot and Medicare/Medicaid/financial aid isn’t enough, emotionally you donating and sharing would help me lots
Today my neurologist told me my long-untreated neurosurgical issues (especially tethered cord) led to muscle atrophy and nerve damage: “you have the nerve health of a 70-year-old” 😢
I get 2 more neurosurgeries this week, donations needed and appreciated www.gofundme.com/f/help-emily...
I get 2 more neurosurgeries this week, donations needed and appreciated www.gofundme.com/f/help-emily...
Donate to We've got your back! Help Emily get spinal care, organized by Jessica Smolinski
*PLEASE SHARE even if you can't donate*
Hello everyone!
This fu… Jessica Smolinski needs your support for We've got your back! Help Emily get spinal care
www.gofundme.com
February 11, 2025 at 2:37 AM
Today my neurologist told me my long-untreated neurosurgical issues (especially tethered cord) led to muscle atrophy and nerve damage: “you have the nerve health of a 70-year-old” 😢
I get 2 more neurosurgeries this week, donations needed and appreciated www.gofundme.com/f/help-emily...
I get 2 more neurosurgeries this week, donations needed and appreciated www.gofundme.com/f/help-emily...