Gina Assaf 🍉
@ginaassaf.bsky.social
Participatory Design & Research/Strategy - Tech for Social & Global impact. Co-leading #longCovid @patientled research and Managing @obidigital
Reposted by Gina Assaf 🍉
in the gop tax plan, the top 0.1% gets more than all the households in the bottom half of america combined
here's the same thing, but showing percentiles
it's a huge tax cut for the top 5% and way less for everyone else
it's a huge tax cut for the top 5% and way less for everyone else
May 10, 2025 at 11:05 PM
in the gop tax plan, the top 0.1% gets more than all the households in the bottom half of america combined
Reposted by Gina Assaf 🍉
delved into the world of games and Long COVID for one of my favorite pieces i've gotten to report!
for @thesicktimes.bsky.social: some truly thoughtful perspectives and very cool games from @stevewilcox.bsky.social, @zoyander.cc, and @chantalbritt.bsky.social.
thesicktimes.org/2025/05/06/l...
for @thesicktimes.bsky.social: some truly thoughtful perspectives and very cool games from @stevewilcox.bsky.social, @zoyander.cc, and @chantalbritt.bsky.social.
thesicktimes.org/2025/05/06/l...
“Long COVID Mode”: Seeing the crisis through games - The Sick Times
Games uniquely incorporate emotional and social factors that influence how we take in information — making them surprisingly useful communication tools in a world in denial about the ongoing threats o...
thesicktimes.org
May 7, 2025 at 6:55 PM
delved into the world of games and Long COVID for one of my favorite pieces i've gotten to report!
for @thesicktimes.bsky.social: some truly thoughtful perspectives and very cool games from @stevewilcox.bsky.social, @zoyander.cc, and @chantalbritt.bsky.social.
thesicktimes.org/2025/05/06/l...
for @thesicktimes.bsky.social: some truly thoughtful perspectives and very cool games from @stevewilcox.bsky.social, @zoyander.cc, and @chantalbritt.bsky.social.
thesicktimes.org/2025/05/06/l...
At #nationalhealthcouncil 2025 science of patient engagement symposium on elevating innovation. Looking forward to speaking tomorrow on the panel on Data at the speed of care: Engineering universal access, patient driven data to inform AI and ML tools. #spes2025
May 7, 2025 at 5:16 PM
At #nationalhealthcouncil 2025 science of patient engagement symposium on elevating innovation. Looking forward to speaking tomorrow on the panel on Data at the speed of care: Engineering universal access, patient driven data to inform AI and ML tools. #spes2025
Reposted by Gina Assaf 🍉
Meanwhile, Palestinians in Gaza are down to the final rations of supplies, and offering barters since food aid ran out - I have sugar if anyone can trade for fuel. Seeking a container of instant coffee. I need salt, will buy or trade.
May 1, 2025 at 1:39 AM
Meanwhile, Palestinians in Gaza are down to the final rations of supplies, and offering barters since food aid ran out - I have sugar if anyone can trade for fuel. Seeking a container of instant coffee. I need salt, will buy or trade.
Reposted by Gina Assaf 🍉
ATTN: people with #MECFS, people with #LongCovid, & disability allies, please show up on May 12th (in DC & from home!)
#DisabilitySOS
#MillionsMissing
#DisabilitySOS
#MillionsMissing
You are invited to join us for #MIllionsMissing #DisabilitySOS on May 12th - two weeks from today! Join us in DC and online! All you need to know can be found here: www.meactions.org/millionsmiss...
#MEAction will be sounding a Disability SOS at the nation’s capitol and across social media.
#PwME
#MEAction will be sounding a Disability SOS at the nation’s capitol and across social media.
#PwME
April 28, 2025 at 11:28 PM
ATTN: people with #MECFS, people with #LongCovid, & disability allies, please show up on May 12th (in DC & from home!)
#DisabilitySOS
#MillionsMissing
#DisabilitySOS
#MillionsMissing
Reposted by Gina Assaf 🍉
Without ongoing funding, PLRC will have to scale back our work after August.
Please consider donating if you're able, or send to folks who would like to support us.
We feel indebted to our community and are grateful to you all! 💓
bit.ly/plrc-donate 9/
Please consider donating if you're able, or send to folks who would like to support us.
We feel indebted to our community and are grateful to you all! 💓
bit.ly/plrc-donate 9/
Donate – Patient Led Research Collaborative
bit.ly
April 17, 2025 at 8:02 PM
Without ongoing funding, PLRC will have to scale back our work after August.
Please consider donating if you're able, or send to folks who would like to support us.
We feel indebted to our community and are grateful to you all! 💓
bit.ly/plrc-donate 9/
Please consider donating if you're able, or send to folks who would like to support us.
We feel indebted to our community and are grateful to you all! 💓
bit.ly/plrc-donate 9/
Reposted by Gina Assaf 🍉
Dr. Kelly O'Brien:
"I’m grateful for PLRC’s unwavering leadership and scientific rigor in Long COVID participatory action research, and looking forward to growing use of PLRC’s Patient-Led Research Scorecards." 8/
"I’m grateful for PLRC’s unwavering leadership and scientific rigor in Long COVID participatory action research, and looking forward to growing use of PLRC’s Patient-Led Research Scorecards." 8/
April 17, 2025 at 8:02 PM
Dr. Kelly O'Brien:
"I’m grateful for PLRC’s unwavering leadership and scientific rigor in Long COVID participatory action research, and looking forward to growing use of PLRC’s Patient-Led Research Scorecards." 8/
"I’m grateful for PLRC’s unwavering leadership and scientific rigor in Long COVID participatory action research, and looking forward to growing use of PLRC’s Patient-Led Research Scorecards." 8/
Reposted by Gina Assaf 🍉
Dr. Flora Cornish:
"PLRC has changed the landscape of patient engagement in research, merging patients’ lived and scientific expertise to produce global breakthroughs." 7/
"PLRC has changed the landscape of patient engagement in research, merging patients’ lived and scientific expertise to produce global breakthroughs." 7/
April 17, 2025 at 8:02 PM
Dr. Flora Cornish:
"PLRC has changed the landscape of patient engagement in research, merging patients’ lived and scientific expertise to produce global breakthroughs." 7/
"PLRC has changed the landscape of patient engagement in research, merging patients’ lived and scientific expertise to produce global breakthroughs." 7/
Reposted by Gina Assaf 🍉
Dr. Wes Ely:
"Without the leadership of PLRC, patients would be in greater despair and clinicians would have far less guidance about how to address suffering for those experiencing the multi-organ involvement of Long COVID." 6/
"Without the leadership of PLRC, patients would be in greater despair and clinicians would have far less guidance about how to address suffering for those experiencing the multi-organ involvement of Long COVID." 6/
April 17, 2025 at 8:02 PM
Dr. Wes Ely:
"Without the leadership of PLRC, patients would be in greater despair and clinicians would have far less guidance about how to address suffering for those experiencing the multi-organ involvement of Long COVID." 6/
"Without the leadership of PLRC, patients would be in greater despair and clinicians would have far less guidance about how to address suffering for those experiencing the multi-organ involvement of Long COVID." 6/
Reposted by Gina Assaf 🍉
Dr. Michael Peluso:
"Working with PLRC has been one of the greatest privileges of the last 5 years - their efforts have profoundly influenced the direction of Long COVID research." 5/
"Working with PLRC has been one of the greatest privileges of the last 5 years - their efforts have profoundly influenced the direction of Long COVID research." 5/
April 17, 2025 at 8:02 PM
Dr. Michael Peluso:
"Working with PLRC has been one of the greatest privileges of the last 5 years - their efforts have profoundly influenced the direction of Long COVID research." 5/
"Working with PLRC has been one of the greatest privileges of the last 5 years - their efforts have profoundly influenced the direction of Long COVID research." 5/
Reposted by Gina Assaf 🍉
Dr. Ziyad Al-Aly:
"PLRC has been a transformational force in Long Covid. These people are my heroes & I mean that in every sense of the word. My team and I took inspiration from PLRC very early in the pandemic; the PLRC survey...made us pursue Long Covid research and advocacy." 4/
"PLRC has been a transformational force in Long Covid. These people are my heroes & I mean that in every sense of the word. My team and I took inspiration from PLRC very early in the pandemic; the PLRC survey...made us pursue Long Covid research and advocacy." 4/
April 17, 2025 at 8:02 PM
Dr. Ziyad Al-Aly:
"PLRC has been a transformational force in Long Covid. These people are my heroes & I mean that in every sense of the word. My team and I took inspiration from PLRC very early in the pandemic; the PLRC survey...made us pursue Long Covid research and advocacy." 4/
"PLRC has been a transformational force in Long Covid. These people are my heroes & I mean that in every sense of the word. My team and I took inspiration from PLRC very early in the pandemic; the PLRC survey...made us pursue Long Covid research and advocacy." 4/
Reposted by Gina Assaf 🍉
We've since published 40 papers (including patient-prioritized topics and multiple top-cited works in the field), funded $5 million in external research, advanced some of the most meaningful advocacy milestones, and more.
Some quotes from our research allies:
3/
Some quotes from our research allies:
3/
April 17, 2025 at 8:02 PM
We've since published 40 papers (including patient-prioritized topics and multiple top-cited works in the field), funded $5 million in external research, advanced some of the most meaningful advocacy milestones, and more.
Some quotes from our research allies:
3/
Some quotes from our research allies:
3/
Reposted by Gina Assaf 🍉
5 years ago today, PLRC launched our first survey to get answers for the thousands of patients who didn't recover after COVID.
This led to our May 2020 report (patientresearchcovid19.com/research/rep...) and Dec 2020 paper (medrxiv.org/content/10.1...), which remains top-cited in the field. 2/
This led to our May 2020 report (patientresearchcovid19.com/research/rep...) and Dec 2020 paper (medrxiv.org/content/10.1...), which remains top-cited in the field. 2/
Report: What Does COVID-19 Recovery Actually Look Like? – Patient Led Research Collaborative
patientresearchcovid19.com
April 17, 2025 at 8:02 PM
5 years ago today, PLRC launched our first survey to get answers for the thousands of patients who didn't recover after COVID.
This led to our May 2020 report (patientresearchcovid19.com/research/rep...) and Dec 2020 paper (medrxiv.org/content/10.1...), which remains top-cited in the field. 2/
This led to our May 2020 report (patientresearchcovid19.com/research/rep...) and Dec 2020 paper (medrxiv.org/content/10.1...), which remains top-cited in the field. 2/
Reposted by Gina Assaf 🍉
PLRC is 5 years old today!!!!
If you are able, please consider donating to help sustain #LongCOVID research when it’s needed most.
bit.ly/plrc-donate 1/
If you are able, please consider donating to help sustain #LongCOVID research when it’s needed most.
bit.ly/plrc-donate 1/
April 17, 2025 at 8:02 PM
PLRC is 5 years old today!!!!
If you are able, please consider donating to help sustain #LongCOVID research when it’s needed most.
bit.ly/plrc-donate 1/
If you are able, please consider donating to help sustain #LongCOVID research when it’s needed most.
bit.ly/plrc-donate 1/
Reposted by Gina Assaf 🍉
A panel discussion about Long COVID will be hosted on Thurs 4/10 by the Yale Graduate & Professional Student Senate. Panelists will include Dr. Akiko Iwasaki (@virusesimmunity.bsky.social), Dr. David Putrino, disability advocates, and students. Register at: ysph.yale.edu/event/long-c...
#LongCOVID
#LongCOVID
April 10, 2025 at 1:37 AM
A panel discussion about Long COVID will be hosted on Thurs 4/10 by the Yale Graduate & Professional Student Senate. Panelists will include Dr. Akiko Iwasaki (@virusesimmunity.bsky.social), Dr. David Putrino, disability advocates, and students. Register at: ysph.yale.edu/event/long-c...
#LongCOVID
#LongCOVID
Reposted by Gina Assaf 🍉
Today @thesicktimes.bsky.social: I did an exit interview with @lisamccorkell.bsky.social, reflecting on her five years at the Patient-Led Research Collaborative.
You can read the transcript or listen on our podcast (thanks to @hashtagjames.bsky.social!!). thesicktimes.org/2025/04/07/l...
You can read the transcript or listen on our podcast (thanks to @hashtagjames.bsky.social!!). thesicktimes.org/2025/04/07/l...
Lisa McCorkell reflects on five years of Long COVID research, and leaving PLRC - The Sick Times
Lisa McCorkell, one of the founders of the Patient-Led Research Collaborative (or PLRC), recently stepped down after five years co-leading the organization. The Sick Times co-founder and managing edit...
thesicktimes.org
April 7, 2025 at 5:28 PM
Today @thesicktimes.bsky.social: I did an exit interview with @lisamccorkell.bsky.social, reflecting on her five years at the Patient-Led Research Collaborative.
You can read the transcript or listen on our podcast (thanks to @hashtagjames.bsky.social!!). thesicktimes.org/2025/04/07/l...
You can read the transcript or listen on our podcast (thanks to @hashtagjames.bsky.social!!). thesicktimes.org/2025/04/07/l...
Reposted by Gina Assaf 🍉
Hey y’all—David Esteban’s @patientled.bsky.social funded Long Covid study has hit a snag just before the finish line—the cost to process samples went up. They’ve collected 43 but now can only run 20. $7000 would cover the rest!
Thanks so much for giving or boosting!
Thanks so much for giving or boosting!
Support David Esteban's study on Microbial Metabolites in Long COVID
* Heads up: Zeffy has a default "tip" of 17% that goes to them, but it's not required. When you go to donate, you can select the dropdown under "Help keep Zeffy free for Renegade Research" and put in ...
www.zeffy.com
April 3, 2025 at 5:42 PM
Hey y’all—David Esteban’s @patientled.bsky.social funded Long Covid study has hit a snag just before the finish line—the cost to process samples went up. They’ve collected 43 but now can only run 20. $7000 would cover the rest!
Thanks so much for giving or boosting!
Thanks so much for giving or boosting!
Reposted by Gina Assaf 🍉
The elimination of: grants to study #LongCovid, the Office of LC, & Advisory Committee on LC — have sent a chilling signal. We encourage folks to take the following action led by our partners:
1. Call your reps: win.newmode.net/longcovidcam...
2. Email your reps: actionnetwork.org/letters/long...
1. Call your reps: win.newmode.net/longcovidcam...
2. Email your reps: actionnetwork.org/letters/long...
March 27, 2025 at 9:37 PM
The elimination of: grants to study #LongCovid, the Office of LC, & Advisory Committee on LC — have sent a chilling signal. We encourage folks to take the following action led by our partners:
1. Call your reps: win.newmode.net/longcovidcam...
2. Email your reps: actionnetwork.org/letters/long...
1. Call your reps: win.newmode.net/longcovidcam...
2. Email your reps: actionnetwork.org/letters/long...
Reposted by Gina Assaf 🍉
🚨 BREAKING: Long COVID research grants rescinded earlier this week have been restored, according to researchers & patient reps. Advocates organized quickly yesterday in response to the news, helping reverse the decision.
Exclusive in @thesicktimes.bsky.social
thesicktimes.org/2025/03/28/u...
Exclusive in @thesicktimes.bsky.social
thesicktimes.org/2025/03/28/u...
UPDATE: RECOVER Long COVID pathobiology grants restored - The Sick Times
Long COVID research grants from the National Institutes of Health’s RECOVER program will be restored following news stories about their abrupt cancellations and advocacy to restore the funding, accord...
thesicktimes.org
March 28, 2025 at 7:36 PM
🚨 BREAKING: Long COVID research grants rescinded earlier this week have been restored, according to researchers & patient reps. Advocates organized quickly yesterday in response to the news, helping reverse the decision.
Exclusive in @thesicktimes.bsky.social
thesicktimes.org/2025/03/28/u...
Exclusive in @thesicktimes.bsky.social
thesicktimes.org/2025/03/28/u...
Reposted by Gina Assaf 🍉
Gaza is once again gripped by violence, pushing its people into deeper psychological distress, with many now witnessing hallucinations, depression, and anxiety 👇
Gazans’ mental state at breaking point after ceasefire violation
Gaza is once again gripped by violence, pushing its people into deeper psychological distress, with many now witnessing hallucinations, depression, and anxiety
www.newarab.com
March 26, 2025 at 9:47 AM
Gaza is once again gripped by violence, pushing its people into deeper psychological distress, with many now witnessing hallucinations, depression, and anxiety 👇
Reposted by Gina Assaf 🍉
Folks, very bad news for #LongCOVID. Deep breath.
29 awarded grants to do with COVID and Long COVID have been rescinded by NIH. 🧪
www.science.org/content/arti...
29 awarded grants to do with COVID and Long COVID have been rescinded by NIH. 🧪
www.science.org/content/arti...
March 25, 2025 at 11:13 PM
Folks, very bad news for #LongCOVID. Deep breath.
29 awarded grants to do with COVID and Long COVID have been rescinded by NIH. 🧪
www.science.org/content/arti...
29 awarded grants to do with COVID and Long COVID have been rescinded by NIH. 🧪
www.science.org/content/arti...
Reposted by Gina Assaf 🍉
Politico: 'Long Covid office latest casualty in HHS shake-up'
'Advocates for patients with long Covid are outraged at the administration’s decision, saying it appears to contradict promises that HHS Secretary Robert F. Kennedy Jr. made...'
www.politico.com/newsletters/...
'Advocates for patients with long Covid are outraged at the administration’s decision, saying it appears to contradict promises that HHS Secretary Robert F. Kennedy Jr. made...'
www.politico.com/newsletters/...
Long Covid office latest casualty in HHS shake-up
The Trump administration is closing HHS' long Covid office, according to an internal email seen by POLITICO.
www.politico.com
March 25, 2025 at 2:31 PM
Politico: 'Long Covid office latest casualty in HHS shake-up'
'Advocates for patients with long Covid are outraged at the administration’s decision, saying it appears to contradict promises that HHS Secretary Robert F. Kennedy Jr. made...'
www.politico.com/newsletters/...
'Advocates for patients with long Covid are outraged at the administration’s decision, saying it appears to contradict promises that HHS Secretary Robert F. Kennedy Jr. made...'
www.politico.com/newsletters/...
Reposted by Gina Assaf 🍉
HHS's Office of Long COVID Research and Practice has been DOGEd. Closing this week.
March 24, 2025 at 9:23 PM
HHS's Office of Long COVID Research and Practice has been DOGEd. Closing this week.
Reposted by Gina Assaf 🍉
