Gina Assaf 🍉
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ginaassaf.bsky.social
Gina Assaf 🍉
@ginaassaf.bsky.social
820 followers 110 following 10 posts
Participatory Design & Research/Strategy - Tech for Social & Global impact. Co-leading #longCovid @patientled research and Managing @obidigital
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Reposted by Gina Assaf 🍉
libyaliberty.bsky.social
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.
The text in the post Photos of food supplies being offered for barter: a pint or two of oil, canned items, small bags of pasta
May 1, 2025 at 1:39 AM
Reposted by Gina Assaf 🍉
patientled.bsky.social
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/
Donate – Patient Led Research Collaborative
bit.ly
April 17, 2025 at 8:02 PM
Reposted by Gina Assaf 🍉
patientled.bsky.social
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.” – Dr. Kelly O’Brien, Professor in the Department of Physical Therapy, at the University of Toronto, Applying Dynamic Disability.
April 17, 2025 at 8:02 PM
Reposted by Gina Assaf 🍉
patientled.bsky.social
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. Collaborating with PLRC and a diverse scientific team on a project on Long Covid in Brazil has taught me what a disability-justice-informed research project can be, and how to centre patients’ experience and needs to produce really grounded recommendations.” – Dr. Flora Cornish, Professor in Research Methodology at the London School of Economics and Political Science.
April 17, 2025 at 8:02 PM
Reposted by Gina Assaf 🍉
patientled.bsky.social
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/
Over the past five years, PLRC has sounded the Clarion call for truth about the disease state of Long COVID. 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. In designing our NIH-funded clinical trial of immunomodulation for Long COVID, we were greatly edified by leaders of PLRC, who helped us hone our research design…PLRC, to you I raise a toast and wish you a happy fifth birthday." – Dr. E. Wesley Ely, MD, Professor of Medicine & Critical Care at Vanderbilt University Medical Center.
April 17, 2025 at 8:02 PM
Reposted by Gina Assaf 🍉
patientled.bsky.social
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. The deep alliance between clinician-researchers and patient-researchers from the earliest days of the pandemic has been one of the most important drivers of progress in this field, and is a major motivator for me personally to focus on studying diseases like Long COVID.” – Dr. Michael Peluso, Assistant Professor of Medicine at the University of California, San Francisco
April 17, 2025 at 8:02 PM
Reposted by Gina Assaf 🍉
patientled.bsky.social
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 and I mean that in every sense of the word. My team and I took inspiration from PLRC very early in the pandemic; the original PLRC survey and stories from PLRC members made us pursue Long Covid research and advocacy. The work done by PLRC galvanised a lot of progress over the past 5 years–progress on every front from increasing awareness and understanding of Long Covid, to research, improved clinical care, and advocacy. I have huge admiration for each and every one of them and am eternally grateful for what they have done.” – Dr. Ziyad Al-Aly, Chief of Research and Development Service, VA St. Louis Health Care System
April 17, 2025 at 8:02 PM
Reposted by Gina Assaf 🍉
patientled.bsky.social
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/
April 17, 2025 at 8:02 PM
Reposted by Gina Assaf 🍉
patientled.bsky.social
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/
Report: What Does COVID-19 Recovery Actually Look Like? – Patient Led Research Collaborative
patientresearchcovid19.com
April 17, 2025 at 8:02 PM