COVID-19 Longhauler Advocacy Project
@c19lap.bsky.social
A U.S. based #grassroots, #patientled, all-volunteer 501(c)(3) #nonprofit organization advancing the understanding of & expediting solutions for #LongCOVID. #FBLC #IACC #Disability #PublicHealth https://www.longhauler-advocacy.org
Long COVID isn’t a moment, it’s a mounting public health crisis affecting tens of millions.
This is your moment to help shape the future of Long COVID care, education, and public health.
#LongCOVID. #GivingTuesday #GivingSeason #NonProfit #Donate
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This is your moment to help shape the future of Long COVID care, education, and public health.
#LongCOVID. #GivingTuesday #GivingSeason #NonProfit #Donate
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November 14, 2025 at 8:35 PM
Long COVID isn’t a moment, it’s a mounting public health crisis affecting tens of millions.
This is your moment to help shape the future of Long COVID care, education, and public health.
#LongCOVID. #GivingTuesday #GivingSeason #NonProfit #Donate
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This is your moment to help shape the future of Long COVID care, education, and public health.
#LongCOVID. #GivingTuesday #GivingSeason #NonProfit #Donate
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Since the start of the pandemic, C19LAP has been one of the leading patient voices for Long COVID, fully patient-led, volunteer-run, and grounded in lived experience.
If our work has informed you, supported you, or strengthened the Long COVID movement, please take a moment to leave a review ⬇️
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If our work has informed you, supported you, or strengthened the Long COVID movement, please take a moment to leave a review ⬇️
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November 14, 2025 at 1:52 AM
Since the start of the pandemic, C19LAP has been one of the leading patient voices for Long COVID, fully patient-led, volunteer-run, and grounded in lived experience.
If our work has informed you, supported you, or strengthened the Long COVID movement, please take a moment to leave a review ⬇️
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If our work has informed you, supported you, or strengthened the Long COVID movement, please take a moment to leave a review ⬇️
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The COVID-19 Longhauler Advocacy Project is proud to have donated high-quality N95 masks to the DC Public Health Association (DCPHA)!
After learning more about #LongCOVID, DCPHA will be partnering with us to continue working to raise awareness leading up to Long COVID Awareness Day in March.
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After learning more about #LongCOVID, DCPHA will be partnering with us to continue working to raise awareness leading up to Long COVID Awareness Day in March.
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November 12, 2025 at 4:13 PM
The COVID-19 Longhauler Advocacy Project is proud to have donated high-quality N95 masks to the DC Public Health Association (DCPHA)!
After learning more about #LongCOVID, DCPHA will be partnering with us to continue working to raise awareness leading up to Long COVID Awareness Day in March.
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After learning more about #LongCOVID, DCPHA will be partnering with us to continue working to raise awareness leading up to Long COVID Awareness Day in March.
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The C19Lap team may be heading home, but the mission doesn’t stop. Join us in calling for action on #LongCOVID from the White House, Congress, HHS & beyond! Who will be the first to respond?
November 8, 2025 at 3:51 PM
The C19Lap team may be heading home, but the mission doesn’t stop. Join us in calling for action on #LongCOVID from the White House, Congress, HHS & beyond! Who will be the first to respond?
Today, #C19LAP met with the office of U.S. Senator Marshall to elevate the needs and priorities of the #LongCOVID community.
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November 7, 2025 at 11:23 PM
Today, #C19LAP met with the office of U.S. Senator Marshall to elevate the needs and priorities of the #LongCOVID community.
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The COVID-19 Longhauler Advocacy Project joined #APHA’s #RallyforPublicHealth at the #NationalMall to raise awareness, educate, and engage #publichealth leaders on behalf of the tens of millions living with #LongCOVID. Urgent and scaled action is needed to address this growing public health crisis.
November 6, 2025 at 8:09 PM
The COVID-19 Longhauler Advocacy Project joined #APHA’s #RallyforPublicHealth at the #NationalMall to raise awareness, educate, and engage #publichealth leaders on behalf of the tens of millions living with #LongCOVID. Urgent and scaled action is needed to address this growing public health crisis.
Today, C19LAP presented “Clinical & Public Health Implications of the NASEM Long COVID Definition & Its Role in Standardizing Care – A Roadmap to Long COVID Assessment, Diagnosis, Documentation, Care Management, & Support” on the final day at #APHA. While the conference is over, attendees are…
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November 6, 2025 at 12:28 AM
Today, C19LAP presented “Clinical & Public Health Implications of the NASEM Long COVID Definition & Its Role in Standardizing Care – A Roadmap to Long COVID Assessment, Diagnosis, Documentation, Care Management, & Support” on the final day at #APHA. While the conference is over, attendees are…
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Today, C19LAP presented “Mobilizing State, Local, and Territorial Health Departments
to Confront Long COVID Amid the Public Health Consequences of Federal Abandonment and the Erasure of Programs Serving Millions” at #APHA.
Our team also continued…
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to Confront Long COVID Amid the Public Health Consequences of Federal Abandonment and the Erasure of Programs Serving Millions” at #APHA.
Our team also continued…
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November 5, 2025 at 3:52 AM
Today, C19LAP presented “Mobilizing State, Local, and Territorial Health Departments
to Confront Long COVID Amid the Public Health Consequences of Federal Abandonment and the Erasure of Programs Serving Millions” at #APHA.
Our team also continued…
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to Confront Long COVID Amid the Public Health Consequences of Federal Abandonment and the Erasure of Programs Serving Millions” at #APHA.
Our team also continued…
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C19LAP firmly believes that education is the nucleus for all that needs to happen in the #LongCOVID space. Our strengths are education, resource development, and cross-sector convening. C19LAP is doing the work, everyday, to
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November 3, 2025 at 10:57 PM
C19LAP firmly believes that education is the nucleus for all that needs to happen in the #LongCOVID space. Our strengths are education, resource development, and cross-sector convening. C19LAP is doing the work, everyday, to
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APHA Day 1 was a success. Thank you to all the #publichealth leaders & advocates who work to make this world a safer place.
C19LAPs ability to do this work is dependent on grassroots community support. Please consider donating $5/month to help us continue our mission. www.paypal.com/donate/?host...
C19LAPs ability to do this work is dependent on grassroots community support. Please consider donating $5/month to help us continue our mission. www.paypal.com/donate/?host...
November 3, 2025 at 1:22 AM
APHA Day 1 was a success. Thank you to all the #publichealth leaders & advocates who work to make this world a safer place.
C19LAPs ability to do this work is dependent on grassroots community support. Please consider donating $5/month to help us continue our mission. www.paypal.com/donate/?host...
C19LAPs ability to do this work is dependent on grassroots community support. Please consider donating $5/month to help us continue our mission. www.paypal.com/donate/?host...
The scariest this out there this #halloween isn’t the monsters you can see, but the ones you can’t until it’s staring you back in the mirror. Say it 3x COVID, COVID, COVID!
It’s spreading faster than a zombie apocalypse & cuts deeper than Edward Scissorhands. Be like Michael Myers & wear a mask!
It’s spreading faster than a zombie apocalypse & cuts deeper than Edward Scissorhands. Be like Michael Myers & wear a mask!
October 31, 2025 at 12:49 PM
The scariest this out there this #halloween isn’t the monsters you can see, but the ones you can’t until it’s staring you back in the mirror. Say it 3x COVID, COVID, COVID!
It’s spreading faster than a zombie apocalypse & cuts deeper than Edward Scissorhands. Be like Michael Myers & wear a mask!
It’s spreading faster than a zombie apocalypse & cuts deeper than Edward Scissorhands. Be like Michael Myers & wear a mask!
Our team heads to the American Public Health Associations conference. #APHA2025 Is the biggest public health assoc. & conference. C19LAP will present 3x & exhibit. We are wishing our team health & success as they connect w/ thousands to help advance solutions to Long COVID!
October 30, 2025 at 4:52 PM
Our team heads to the American Public Health Associations conference. #APHA2025 Is the biggest public health assoc. & conference. C19LAP will present 3x & exhibit. We are wishing our team health & success as they connect w/ thousands to help advance solutions to Long COVID!
Call to Action
With the government currently shut down, many Members of Congress are back in their home districts, and that means now is the perfect time to reach out and request meetings.
• www.congress.gov/members/find...
• Action Network: actionnetwork.org/letters/4aee...
With the government currently shut down, many Members of Congress are back in their home districts, and that means now is the perfect time to reach out and request meetings.
• www.congress.gov/members/find...
• Action Network: actionnetwork.org/letters/4aee...
www.congress.gov
October 26, 2025 at 3:03 PM
Call to Action
With the government currently shut down, many Members of Congress are back in their home districts, and that means now is the perfect time to reach out and request meetings.
• www.congress.gov/members/find...
• Action Network: actionnetwork.org/letters/4aee...
With the government currently shut down, many Members of Congress are back in their home districts, and that means now is the perfect time to reach out and request meetings.
• www.congress.gov/members/find...
• Action Network: actionnetwork.org/letters/4aee...
October 8, 2025 at 12:39 AM
Join us for a free #LongCOVID #Disability webinar on October 8th at 3pm ET!
The webinar will discuss the confusing & frustrating insurance system, understanding your rights, preparing stronger claims, & knowing what to do if benefits are denied.
Register here:
us06web.zoom.us/webinar/regi...
The webinar will discuss the confusing & frustrating insurance system, understanding your rights, preparing stronger claims, & knowing what to do if benefits are denied.
Register here:
us06web.zoom.us/webinar/regi...
September 29, 2025 at 8:29 PM
Join us for a free #LongCOVID #Disability webinar on October 8th at 3pm ET!
The webinar will discuss the confusing & frustrating insurance system, understanding your rights, preparing stronger claims, & knowing what to do if benefits are denied.
Register here:
us06web.zoom.us/webinar/regi...
The webinar will discuss the confusing & frustrating insurance system, understanding your rights, preparing stronger claims, & knowing what to do if benefits are denied.
Register here:
us06web.zoom.us/webinar/regi...
We want to thank HHS Secretary Kennedy and fellow hosts for convening last week's #LongCOVID roundtable. The COVID-19 Longhauler Advocacy Project’s (C19LAP) leadership watched with great interest.
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www.longhauler-advocacy.org
September 26, 2025 at 1:11 AM
We want to thank HHS Secretary Kennedy and fellow hosts for convening last week's #LongCOVID roundtable. The COVID-19 Longhauler Advocacy Project’s (C19LAP) leadership watched with great interest.
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Please join the COVID-19 Longhauler Advocacy Project in proudly welcoming our newest Board of Directors, Tammy Wilshire and Brooke Keaton. We’re honored to have their leadership, expertise, and unwavering commitment as part of our team. Learn more about them below!
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July 7, 2025 at 7:25 PM
Please join the COVID-19 Longhauler Advocacy Project in proudly welcoming our newest Board of Directors, Tammy Wilshire and Brooke Keaton. We’re honored to have their leadership, expertise, and unwavering commitment as part of our team. Learn more about them below!
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Today marks five years since the COVID-19 Longhauler Advocacy Project (C19LAP) was born out of urgency, out of frustration, and out of the unshakable belief that patients deserve to be heard, believed, and protected.
Read more here:https://longhauler-advocacy.org/so/47PUuRQjx?languageTag=en
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Read more here:https://longhauler-advocacy.org/so/47PUuRQjx?languageTag=en
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Today marks five years since the COVID-19 Longhauler Advocacy Project (C19LAP) was born out of urgency, out of frustration, and out of the unshakable belief that patients deserve to be heard, believed...
In Community, C19LAP Leadership
longhauler-advocacy.org
June 28, 2025 at 10:34 PM
Today marks five years since the COVID-19 Longhauler Advocacy Project (C19LAP) was born out of urgency, out of frustration, and out of the unshakable belief that patients deserve to be heard, believed, and protected.
Read more here:https://longhauler-advocacy.org/so/47PUuRQjx?languageTag=en
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Read more here:https://longhauler-advocacy.org/so/47PUuRQjx?languageTag=en
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URGENT ACTION NEEDED FROM MINNESOTANS!
MN risks losing its Long COVID program among the nation's best with top staff. Legislators seem set on defunding it before session ends May 19. ALL MN constituents, friends & family please urgently send letters, call & advocate repeatedly!
bit.ly/SAVEMNLCPROG
MN risks losing its Long COVID program among the nation's best with top staff. Legislators seem set on defunding it before session ends May 19. ALL MN constituents, friends & family please urgently send letters, call & advocate repeatedly!
bit.ly/SAVEMNLCPROG
Urgent Action Needed: Protect Minnesota’s Long COVID Program
Urgent Action Needed: Protect Minnesota’s Long COVID Program We urgently need your help to protect funding for Minnesota’s Long COVID Program! What's Happening: At this week’s House Health Finance...
actionnetwork.org
May 9, 2025 at 8:28 PM
URGENT ACTION NEEDED FROM MINNESOTANS!
MN risks losing its Long COVID program among the nation's best with top staff. Legislators seem set on defunding it before session ends May 19. ALL MN constituents, friends & family please urgently send letters, call & advocate repeatedly!
bit.ly/SAVEMNLCPROG
MN risks losing its Long COVID program among the nation's best with top staff. Legislators seem set on defunding it before session ends May 19. ALL MN constituents, friends & family please urgently send letters, call & advocate repeatedly!
bit.ly/SAVEMNLCPROG
Reposted by COVID-19 Longhauler Advocacy Project
Studies across 14 nations show 25% to 30% rate of long COVID
Among the 25.1% of participants who said they experienced long-COVID symptoms, 12.8% reported sleeping disorders.
www.cidrap.umn.edu/c...
Among the 25.1% of participants who said they experienced long-COVID symptoms, 12.8% reported sleeping disorders.
www.cidrap.umn.edu/c...
April 17, 2025 at 5:27 PM
Studies across 14 nations show 25% to 30% rate of long COVID
Among the 25.1% of participants who said they experienced long-COVID symptoms, 12.8% reported sleeping disorders.
www.cidrap.umn.edu/c...
Among the 25.1% of participants who said they experienced long-COVID symptoms, 12.8% reported sleeping disorders.
www.cidrap.umn.edu/c...
The WH is reportedly planning a 40% cut—$20B—to NIH in its FY 2026 budget request, slashing it to $26.7B. This would be catastrophic for medical research. www.msn.com/en-us/health...
Congress must reject it. Our lives depend on it.
Contact them today! 1/2
Congress must reject it. Our lives depend on it.
Contact them today! 1/2
MSN
www.msn.com
April 17, 2025 at 1:59 AM
The WH is reportedly planning a 40% cut—$20B—to NIH in its FY 2026 budget request, slashing it to $26.7B. This would be catastrophic for medical research. www.msn.com/en-us/health...
Congress must reject it. Our lives depend on it.
Contact them today! 1/2
Congress must reject it. Our lives depend on it.
Contact them today! 1/2
Is Covid Rewriting the Rules of Aging? Brain Decline Alarms Doctors as millions of long-Covid patients continue to struggle with cognitive difficulties.
Ft: C19LAP BOD Ken Todd.
www.wsj.com/health/welln...
Ft: C19LAP BOD Ken Todd.
www.wsj.com/health/welln...
Is Covid Rewriting the Rules of Aging? Brain Decline Alarms Doctors
Millions of long-Covid patients continue to struggle with cognitive difficulties.
www.wsj.com
April 14, 2025 at 4:16 PM
Is Covid Rewriting the Rules of Aging? Brain Decline Alarms Doctors as millions of long-Covid patients continue to struggle with cognitive difficulties.
Ft: C19LAP BOD Ken Todd.
www.wsj.com/health/welln...
Ft: C19LAP BOD Ken Todd.
www.wsj.com/health/welln...
This is public health in action. Clear communication and getting the word out is the critical first step to protecting communities. (But please retire the flawed RECOVER 12-Sx Study & instead use the consensus 2024 NASEM Long COVID definition).
@mdhumanservices.bsky.social #longcovidawsreness
@mdhumanservices.bsky.social #longcovidawsreness
April 11, 2025 at 5:10 PM
This is public health in action. Clear communication and getting the word out is the critical first step to protecting communities. (But please retire the flawed RECOVER 12-Sx Study & instead use the consensus 2024 NASEM Long COVID definition).
@mdhumanservices.bsky.social #longcovidawsreness
@mdhumanservices.bsky.social #longcovidawsreness
"The cuts in all of our agency are not affecting science," he said. "Front-line enforcement jobs and health delivery jobs are preserved."
Closing the Office for Long COVID Research & Practice certainly affects science & health delivery.
abcnews.go.com/Politics/rfk...
Closing the Office for Long COVID Research & Practice certainly affects science & health delivery.
abcnews.go.com/Politics/rfk...
abcnews.go.com
April 4, 2025 at 2:05 AM
"The cuts in all of our agency are not affecting science," he said. "Front-line enforcement jobs and health delivery jobs are preserved."
Closing the Office for Long COVID Research & Practice certainly affects science & health delivery.
abcnews.go.com/Politics/rfk...
Closing the Office for Long COVID Research & Practice certainly affects science & health delivery.
abcnews.go.com/Politics/rfk...