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COVID-19 Longhauler Advocacy Project

@c19lap.bsky.social

3K followers 3.8K following 180 posts

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

www.longhauler-advocacy.org

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 22h

advance awareness and solutions to #LongCOVID. Long COVID is a #publichealth crisis and demands an urgent, coordinated, response to meet the scale of this devastating disease and its systemic outcomes and impacts. #APHA Day 2
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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 22h

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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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 1d

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...

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 2d

Tomorrow it begins! Check out our booth & amazing team #APHA2025!

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 4d

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!

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 5d

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!

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 9d

- Call your Members of Congress and ask for a meeting.
- Share your story, or that of a loved one, about how Long COVID has impacted your life.
- Urge them to take bipartisan action to address Long COVID and rebuild our public health response.

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 9d

We’re beginning to see bipartisan recognition of the crisis from HHS Secretary Kennedy, Senator Young, Senator Marshall, and Congressman Bergman, and support continuing from members of congress who have previously supported Long COVID initiitves.

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 9d

More than 60 million people in the U.S. are living with Long COVID. This is not a partisan issue, it’s a national public health crisis that affects every community, every state, and every political district.

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 9d

C19LAP is urging all Long COVID patients, caregivers, advocates, and allies to contact your Senators and Representatives today to discuss the urgent need for Congressional action on Long COVID and COVID-19.

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 9d

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...

www.congress.gov

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 27d

REMINDER: 3pm est tomorrow 10/8

us06web.zoom.us/webinar/regi...

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · Sep 29

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...

Promotional graphic for a free educational forum titled “Navigating Long COVID and Disability Insurance: What Patients Need to Know.” Event date: Wednesday, October 8, 2025, at 12:00 PM PDT / 3:00 PM EDT. Discussion led by Karyn Bishof, Founder and President of the COVID-19 Longhauler Advocacy Project, with a presentation by Andrew Kantor, Senior Partner at Kantor & Kantor, LLP. Logos for Kantor & Kantor and the COVID-19 Longhauler Advocacy Project are at the top. On the right side of the image, a woman sits on a couch with her head in her hand, appearing fatigued and distressed, with a blurred double image effect suggesting dizziness or brain fog.

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · Sep 26

Read our full statement here: www.longhauler-advocacy.org/_files/ugd/8...

www.longhauler-advocacy.org

COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · Sep 26

With genuine patient inclusion, clear and accurate messaging, bipartisan support, and adequate long-term funding, we can move from talk to treatment, help people reclaim their lives from Long COVID.

With gratitude, strength, and determination,

The COVID-19 Longhauler Advocacy Project (C19LAP)

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · Sep 26

We are encouraged to see Long COVID discussions and planning back in motion and hope to see additional stakeholders added to the conversation. C19LAP stands ready to partner to expeditiously deliver tangible help and solutions. 3/

COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · Sep 26

In recent months, we saw the programs we attempted to build and scale for our community over the last 5 yrs be dismantled in a matter of weeks. Cross-sector collaborators withdrew from the space in fear, & the chill across the community was unmistakable, & the sense of abandonment overwhelming. 2/

COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · Sep 26

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

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · Jul 7

You can learn more about our team and our mission at
longhauler-advocacy.org/team-community
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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · Jul 7

She has shared her family’s story across media platforms, panel discussions, and conferences, and recently collaborated with the North Carolina Department of Health and Human Services on two public service announcements (PSA’s) about Long COVID.
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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · Jul 7

Brooke Keaton is a December 2020 Longhauler, former early childhood educator, and dedicated mother to two daughters, one of whom also has Long COVID. Brooke brings her passion for education, child health, and equity to her advocacy for underserved communities affected by Long COVID.
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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · Jul 7

Tammy has shared her Long COVID journey through national media outlets, expert panels, and public health conferences, using her voice to advance awareness and change.
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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · Jul 7

a social media moderator, administrator, and Division lead. She is a passionate advocate for clinician education and for expanding healthcare accessibility in rural communities like her own.
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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · Jul 7

Tammy Wilshire is a first-wave March 2020 Longhauler with a professional background in nursing, social services, and nonprofit work, as well as experience leading support groups. A long-standing volunteer with the COVID-19 Longhauler Advocacy Project (C19LAP), Tammy has served as ...
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