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COVID-19 Longhauler Advocacy Project Profile picture
COVID-19 Longhauler Advocacy Project
@C19LH_Advocacy
C19LAP is a patient-led, volunteer C3 organization serving the #LongCOVID community through education, resource development, cross-sector collaboration, & more.
Nov 22, 2023 • 17 tweets • 6 min read
🧵 Want to see a #LongCOVID Billboard in your state?

There is a way for everyone to contribute to this effort!

1. Contribute to a Billboard for $20/day/display (add state to notes)


2. Like, Comment, & Share this initiative (everywhere)

1/ bit.ly/C19LAPBILLBOAR…
Image 3. Send us a picture of a local billboard!
(continue thread for current locations ⬇️)

4. Post a pic telling us your "bc" for supporting this initiative

Check out our live campaigns ⬇️

2/bit.ly/FindC19LAPBill…
bit.ly/GTPacketandSMK…
Aug 15, 2022 • 25 tweets • 14 min read
On 8/7, we discussed the Biden-Harris Administrations reports on #LongCOVID & offered a full circle look at where we are as a community & what is needed to move us forward to ensure each action in motion today, makes it over the finish line. 1/25 🧵

We discuss the need for you, your friends & family & other community allies to GET VOCAL & help get policymakers to understand the decades long impacts that #LongCOVID will have on their communities due to its systemic effects. #AllHandsOnDeck for #LongCovidAction
2/
Aug 12, 2022 • 8 tweets • 6 min read
On 8/11, the @CDCgov revised #COVID19 guidance as to “not disrupt daily life." These changes are reckless.

18M+ w/ #LongCOVID experience significant daily disruptions to life. This revision indicates those casualties are acceptable in exchange for comfort. #StoptheSpread 🧵 1/7 We are calling on the @CDCgov to recognize the long-term, systemic health & socioeconomic impacts caused by the disability faced as a result of #LongCOVID & its associated conditions, a result of the initial #COVID19 infection.

Preventing infection prevents #LongCOVID.
2/7
Aug 1, 2022 • 15 tweets • 11 min read
The U.S. Department of Labor is asking YOU the important questions!

Please Vote For Us & Our Recommendations!
longhauler-advocacy.org/c-19lap-recomm…

Recommendations put forward for the #LongCOVID community came from your participation over the last 2.5 years! Please help elevate those needs! Image You do need to register to vote which you can do here
longcovidatwork.ideascale.com/a/register

We have put together a video " C-19LAP: Navigating the Department of Labor (DOL) Long COVID Online Dialogue" which you can also find here!
Jul 8, 2022 • 9 tweets • 8 min read
This month, we’re celebrating #DisabilityPride, recognizing how far we’ve come & also how far we have left to go to secure justice & equity for all people with #PWD in the U.S. Join us all month long to learn more & to celebrate the ADA anniversary later in July! #ADA2022 #C19LAP This month, we’re celebrating the rights promised by the ADA & reflecting on what more must be done to make its promises a reality. 32 yrs later, disability remains a cause & consequence of poverty in the U.S. It’s time to secure economic justice for all disabled people! #ADA2022
Mar 2, 2022 • 18 tweets • 13 min read
Tonight, millions of #Longhaulers were hoping that @POTUS would become a champion for #LongCovid by utilizing his platform to create more awareness & educate the American people about the sheer devastation Long Covid has caused & will continue to cause for decades. He didn't.
1/ We hoped @potus would continue to emphasize mitigation efforts being essential in our battle against #COVID19 & #LongCovid. Instead, Americans were told they could remove their masks as we move back towards a "safer normal" & that those vaccinated & boosted are protected.

2/
Feb 28, 2022 • 5 tweets • 5 min read
Please check out our piece on @NBCNightlyNews tonight!

Awareness & education are key in propelling the #LongCovid & #chronicillness community forward. #Longhaulers in the millions are being failed in healthcare & social supports.

Options have run out. #LongCovidActionNow
1/5 We want to thank @NBCNightlyNews @CynthiaMcFadden & @KitRamgopal for highlighting the struggle #longhaulers face trying to access benefits.

We hope to see @POTUS address the devastation of #LongCovid in the upcoming #SOTU address & take immediate action to help millions.
2/5
Jan 27, 2022 • 7 tweets • 2 min read
We want to thank MN Governor @GovTimWalz for his latest supplemental budget recommendations which include approximately $3 million per year to establish a permanent state office for #LongCOVID!

🧵1/ We are unsure if this is a result of a request we and 2 other orgs sent a few months ago, but we are eager to collaboratively work together on this and help educate those who will be involved, once this budget is approved and the program is in place.

2/
Nov 17, 2021 • 5 tweets • 3 min read
For those who asked, this study is accepting those hot local to Miami whether you are still in Fl or are willing to travel to participate
(see parts 2-5 for more info)
Mention my name when reaching out (Karyn).
1/5
#FBLC #LONGCOVID #LONGHAULER #PASC #RESEARCH #STUDY #UofMiami For those new to this. This is my myocarditis doc at university of Miami doing this study.
-Covid attacks our endothelium, which we have in every aspect of our body. We complain of blood pooling, bad veins, easy brushing, poor circulation, hr and bp issues.
2/5