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COVID-19 Longhauler Advocacy Project Profile picture
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Feb 28 • 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
Our founder & president (featured in the story @K_Bishof ) can be reached at admin@Longhauler-Advocacy.org or you may check out & contact us through our website longhauler-advocacy.org or on Facebook facebook.com/groups/c19lap/
3/5
Our open letter may be viewed here longhauler-advocacy.org/open-letter & @ the very bottom of the page you can find the community requests outlining Long COVID Assistance Programs & a Long COVID Task Force in addition to our calculations and data!
4/5
If you are still interested in participating in media requests and/ or legislative meetings, please complete this form docs.google.com/forms/d/e/1FAI…
5/5

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More from @C19LH_Advocacy

COVID-19 Longhauler Advocacy Project Profile picture
Mar 2
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/
For #Longhaulers, there is no "return to normal." We also know that people can still get infected with #COVID19 even if vaccinated. While vaccination helps prevent severe disease during acute infection, we KNOW that #LongCovid most commonly occurs in mild-moderate cases.
3/
Read 13 tweets
COVID-19 Longhauler Advocacy Project Profile picture
Jan 27
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/
In order for it to go into effect, the Minnesota state legislature must pass an authorizing bill and appropriate money during it's 2022 legislative session,which runs from January 31 to May 23.

PLEASE CONTACT YOUR MN LAWMAKERS URGING THEM TO SUPPORT AND PASS THIS!

2/
Read 7 tweets
COVID-19 Longhauler Advocacy Project Profile picture
Nov 17, 2021
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
A lot of this is likely from endothelial dysfunction which I believe *may* be the trigger of pots or dysautonomia in many of us.
- I only grew 1 of 6 tubes back showing endothelial dysfunction.
3/5
Read 5 tweets

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