iiinova — where your digital self keeps evolving

Karyn Bishof @kbishof.bsky.social · 29/08/2026

Help Jayani reach his goal towards tournament attendance this season! popup.doublegood.com/s/k6ww48b3

Karyn Bishof @kbishof.bsky.social · 29/08/2026

My son is fundraising through his soccer club to help w/ tournament attendance (very important during his SR year & recruitment period). If you like popcorn & are feeling generous, please check out the following link to support him (& get some delicious popcorn). TY popup.doublegood.com/s/k6ww48b3

popup.doublegood.com

Support Jayani’s Pop-Up Store

Click here to buy our delicious popcorn and 50% of your purchase benefits this fundraiser. #doublegood #dgpopup

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Reposted by Karyn Bishof

COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 01/12/2025

You have the power to shift what happens next. Your support accelerates clinician education, research translation, and public health alignment at a time when federal leadership has retreated. Take the lead: bit.ly/FR4LC26 #LongCOVID #GivingTuesday #SystemsChange #SocialImpact

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Reposted by Karyn Bishof

COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 01/12/2025

The #LongCOVID crisis is accelerating while the national response collapses. Your support strengthens the national infrastructure families urgently need. Donate or start a fundraiser: bit.ly/FR4LC26 #GivingTuesday #PublicHealthMatters

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Karyn Bishof @kbishof.bsky.social · 29/11/2025

C19LAP is ready to step in & lead a coordinated national response to #LongCOVID in the absence & abandonment of a federal response, but we cannot do it without your support. We launched a peer to peer fundraiser. Donate / start yours here: bit.ly/FR4LC26 Top 5 Fundraisers receive a TY package!

bit.ly

Help Lead the Long COVID Response Millions Need!

The crisis is growing. The response is shrinking. We need you.Long COVID affects an estimated seventy million people in the United States, and nearly every Long COVID program has been dismantled six y...

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Reposted by Karyn Bishof

COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 30/10/2025

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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Karyn Bishof @kbishof.bsky.social · 13/10/2025

On #IndigenousPeoplesDay, remember: the violence never stopped. Colonization just changed its form, from stolen land to stolen children, erased histories, and borders that criminalize the very people this land belongs to. We are still witnessing the same injustice.

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Karyn Bishof @kbishof.bsky.social · 11/10/2025

@SecKennedy our community is dying from #LongCOVID. While its disabling impacts have fractured our national infrastructure, the deaths associated with Long COVID are far under represented & largely ignored. We need urgent leadership & action. We need solutions. We need to educate

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Karyn Bishof @kbishof.bsky.social · 02/10/2025

The cost of #LongCOVID This is ONLY March - present of this year. Prior, Jan-Feb I paid $2,000+. My SSD is ~$1,400/mo. I have Medicare. I currently owe over $8,000. This is not sustainable with living. I am one of tens of millions with Long COVID.

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Reposted by Karyn Bishof

COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 29/09/2025

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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Karyn Bishof @kbishof.bsky.social · 05/09/2025

This is absolutely horrible news. Let’s bring the prey on vulnerable patients desperate for their lives back who will do anything, even pay their life savings, sell their homes, etc crowd to lead Long COVID research. Think supplement peddlers meets meets Fl surgeon general, meets cure offerer.

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Karyn Bishof @kbishof.bsky.social · 27/08/2025

You know what worked… The collaboration and unity that was summer fall and winter 2020. Bring that back. Drop the ego’s. #LongCOVID solutions depend on it. OUR LIVES DEPEND ON IT. This 2023-present fighting and race to the top of the podium isn’t it.

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Karyn Bishof @kbishof.bsky.social · 23/08/2025

After two long years of fighting and advocating for myself, my port is in. Hopefully this gets me better access to medical care and quality of life. #LongCOVID #POTS #Gastroparesis

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Karyn Bishof @kbishof.bsky.social · 20/08/2025

Nothing like pending a lymph node and bilaterally tonsillectomy next Friday, and being told the port I was waiting til January for is now being put in THIS Friday. Not mentally or physically prepared for this.

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Karyn Bishof @kbishof.bsky.social · 18/08/2025

Can I tell you that I really never thought I’d be in people’s inboxes and DMs like hey do you want my organs and tissues for Long COVID research, I’m having them out in two weeks. What a time.

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Karyn Bishof @kbishof.bsky.social · 10/08/2025

As school starts tomorrow for parts of Florida, this is a reminder, that when schools start back up after summer, winter, and spring break, transmission & cases take off. While you should ALWAYS protect yourself against COVID+, take the extra precautions the first few weeks. ⬇️

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Karyn Bishof @kbishof.bsky.social · 21/07/2025

Me: submits a modification request for my home for my disabilities. HOA: no, doesn’t align with bylaws. Me: ada/ fair housing request supersede HOA: no Me: your fines for not complying at astronomical plus my civil suit. HOA: no Me: ask the HOA attorney. HOA: approved

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Karyn Bishof @kbishof.bsky.social · 20/06/2025

I better see all the white + families helping carpool and get these kids to their games and tournaments for their parents who may be afraid to go.

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Karyn Bishof @kbishof.bsky.social · 18/06/2025

From our friend Allison, from what was once the Office for Long COVID. 💜 open.substack.com/pub/inneruni...

open.substack.com

A Love Letter to Long COVID

and a plea for collective grieving

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Karyn Bishof @kbishof.bsky.social · 18/06/2025

Florida: Sooooo where are we all getting our saline from? What insurance / manufacturing companies are back up and running and able to supply post hurricane that took out facility? I need a port but that comes with fluids and apparently it’s still an issue. Honestly at about life or death point.

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Karyn Bishof @kbishof.bsky.social · 16/06/2025

Annnnd I’m getting a port and home heath services. 😔

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Karyn Bishof @kbishof.bsky.social · 22/05/2025

Extremly bad news today folks. 🧵 www.msnbc.com/opinion/msnb... The “One Big Beautiful Bill,” passed by the U.S. House of Representatives on May 22, 2025, includes significant reductions to major social programs:

msnbc.com

Opinion | There’s a reason Republicans want to hide what’s in their megabill

If that sounds like hyperbole, it’s not.

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Karyn Bishof @kbishof.bsky.social · 17/05/2025

I tried to watch the Polybio today but after about 2hrs my fractured nose & concussion said no more 😔 I’m pretty disappointed! But, I look fwd to the recording & going back through things. Staying up to date is essential yet limited opps exist. Ty participants.

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Karyn Bishof @kbishof.bsky.social · 25/04/2025

HI! am looking for assistance programs/ grants that help people with disabilities with the costs to make their homes accessible. My main issue is my home is in a trust and I do not qualify for many programs as technically the “trust is the homeowner” which is insane. TIA

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Karyn Bishof @kbishof.bsky.social · 23/04/2025

If you have social security and owe student loans, this is a very important piece of info to have and know. Just another way the disabled and chronically ill will be harmed. www.businessinsider.com/student-loan...

businessinsider.com

Millions of student-loan borrowers could start losing Social Security benefits and tax refunds in 2 weeks if they don't pay up

For the first time in five years, Trump is resuming collections for defaulted student-loan borrowers on May 5.

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Reposted by Karyn Bishof

CIDRAP @cidrap.bsky.social · 17/04/2025

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...

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Karyn Bishof @kbishof.bsky.social · 17/04/2025

Republicans: COVID ruined kids education when schools shut down a few weeks. Republicans: kids getting shot and dying and being traumatized by said shooting has no impact on their education. #FSU #MSD

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Karyn Bishof @kbishof.bsky.social · 10/04/2025

@massgenbrigham.bsky.social you are failing the very patients you took an oath to protect. People should not have to become chronically ill, disabled, or die because of your lax & negligent policies. Masking saves lives in more ways than one & prevents the systemic consequences. Do better!

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Karyn Bishof @kbishof.bsky.social · 06/04/2025

@50501movement.bsky.social Hi all. Here to talk about disability and an Idea for organizers and the community to participate in many of these events. Many of us are In 100% support and want to be Involveded but cannot physicallylly show up. We want to he visible, fight, and show support. 1/2

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Karyn Bishof @kbishof.bsky.social · 04/04/2025

Tomorrow is the #HandsOff rallies with #50501 nationally. Here is the list of all locations! docs.google.com/spreadsheets... #HandsOffLongCOVID looks good on a poster. Wear teal!

docs.google.com

April 5 Protests Planned

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Karyn Bishof @kbishof.bsky.social · 27/03/2025

Pretty interesting site www.isidewith.com/candidates/r... on @SecKennedy “stances.” Here’s a highlight of a few. Such disconnect.

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Karyn Bishof @kbishof.bsky.social · 18/03/2025

You know how many family members and friends (outside LC community) checked in on me for #LongCOVIDAwarenessDay & my 5-year #LongCOVID anniversary—acknowledging the disability that ruined my life & caused immense trauma & hardship? NOT A SINGLE FUCKING ONE.

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 12/03/2025

Did you know it was Long COVID Awareness Week? Join us for a week of actions and events that help raise awareness and drive solutions for #LongCOVID. #LongCOVIDAwareness cannot happen without you! Head over to www.longhauler-advocacy.org/lcad-2025 for ways you can get involved!

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 10/03/2025

#LongCOVIDAwareness2025 3/10– A Day of Community Recognition & Support Today begins #LongCOVIDAwarenessWeek & #FiveYearsLater, we stand together to recognize & uplift those impacted by #LongCOVID & cont the fight. Head to bit.ly/LCAD2025 for our daily calendar & instructions! #LongCOVIDMassFollow ⬇️

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 11/03/2025

Invest in change. Donate to help strengthen policy reform, public health initiatives, and patient-led action. Your support fuels progress! bit.ly/C19LAPDONATEPP #LongCOVIDAwareness2025 #DonatetoLongCOVID #LongCOVIDSupport #NonProfit #LongCOVIDAwareness #LongCOVIDAwarenessWeek

Background image of the U.S. Capitol building.
White text overlay: "COVID-19 Longhauler Advocacy Project’s 2025 Long COVID Awareness Week Actions & Events" followed by a bulleted list of action items, including contacting officials, sending personalized letters, posting about government impact, and donating.
Bottom section features a teal and black banner with the Long COVID Awareness ribbon, the date "Tuesday, March 11th," and logos of the Longhauler Advocacy Project (C19LAP).
Small caption: "A Day for Recognizing the Failures or Successes of Government Response."

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Reposted by Karyn Bishof

COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 11/03/2025

#LongCOVID policies impact lives. Share how recent government actions (or inaction) have affected you and why funding, programs, & protections MUST continue. Instructions Here: docs.google.com/document/d/1... #LongCOVIDAwareness2025 #LongCOVIDPolicy #DisabilityRights #LongCOVIDAwareness ⬇️

Background image of a person in a suit pushing a wheelchair.
White text overlay: "Donate to help strengthen policy reform, public health initiatives, and patient-led action."
Bottom section contains a teal and black banner with the Long COVID Awareness ribbon, and the date "Tuesday, March 11th."
Small caption: "A Day for Recognizing the Failures or Successes of Government Response."

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 11/03/2025

Your story matters! After completing our action, send a personalized letter about your #LongCOVID experience, needs, and policy demands. Instructions: docs.google.com/document/d/1... #LongCOVIDAwareness2025 #ResearchFunding #LongCOVIDPolicy #LongCOVIDAwareness #LongCOVIDAwarenessWeek⬇️

Background image of a person holding a smartphone near a laptop, appearing to type.
White text overlay: "Post about how recent government actions have impacted you & why Long COVID programs & initiatives matter."
Bottom section features a teal and black banner with a Long COVID Awareness ribbon, and the date "Tuesday, March 11th."
Small caption: "A Day for Recognizing the Failures or Successes of Government Response."

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COVID-19 Longhauler Advocacy Project @c19lap.bsky.social · 11/03/2025

Complete our 30-second action to contact the President, VP, Congress, Governors, & state legislators. Demand action for #LongCOVID NOW! 🔗https://bit.ly/LCA25AN #LongCOVIDAwareness2025 #LongCOVIDAwareness #LongCOVIDAwarenessWeek #ContactNationalLeadership #LongCOVIDPolicy ⬇️

Background image of the U.S. Capitol dome.
White text overlay: "Send a personalized letter about your Long COVID experience/needs/requests to the president, VP, congress, governors, and U.S. state legislators."
Bottom section has a teal and black banner with the Long COVID Awareness ribbon, and the date "Tuesday, March 11th."
Small caption: "A Day for Recognizing the Failures or Successes of Government Response."

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Karyn Bishof @kbishof.bsky.social · 07/03/2025

Today #LongCOVID patient advocates were removed from the AHRQ #LongCOVIDCareNetwork at the direction of @HHSGov due to a contract being terminated by #ExecutiveOrder. The initiative remains, but the #patients do not. #NothingAboutUsWithoutUs #LongCOVIDAwareness2025 IS A MUST!

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