Long Covid Moonshot
@LCMoonshot
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18 million Americans suffering with Long Covid, and ZERO treatments. We need a moonshot for Long Covid research funding! Press: contact @longcovidmoonshot .com
Washington, DC
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BREAKING: Senator Bernie Sanders drafts proposal for Long Covid Moonshot.
The proposal earmarks $10B in Long Covid research funding over the next decade.
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In case you didn’t know, SARS-COV-2 can persist in your brain for *years*
Here’s the
@NIHDirector
discussing viral persistence and its potential role in
#LongCovid
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5.8 MILLION American children are suffering
#LongCovid
as their childhoods pass them by. We need sustained and robust research funding now, for our future – and theirs.
@LongCovidKids
@LongCovidFam
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"We need more money to do the kind of research that is necessary to come up with a treatment."
@SenSanders
speaking on
#LongCovid
and his recent moonshot proposal.
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Due to popular demand, you can now easily download and print the
@LCMoonshot
fact sheet we shared at the Senate hearing!
Get the facts 👇
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So proud to bring
#LongCovid
to the front page of print media – spreading the message to so many unreached people. Thank you,
@USATODAY
, for being on the forefront of this crucially urgent issue affecting millions.
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MAKE YOUR VOICE HEARD:
Call the CDC & demand they roll back their single day COVID isolation guidance!
800-232-4636
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We are grateful for
@SenSanders
leadership on
#LongCovid
. We enthusiastically support his Moonshot proposal, which we believe will greatly benefit the millions suffering with this condition.
We just sent his team our feedback, and wanted to share our thoughts with you all.
🧵
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NEW CAMPAIGN ALERT 🚀
We are calling Congress to ensure
#LongCovid
research funding is included in the FY25 budget.
Senators Markey, Kaine, and Duckworth have cosponsored a letter calling for $1B+ in funding. It needs more signatures by May 7th!
Guide:
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"my world came to a devastating, painful stop, and I lost everything" -
@MamaSitaa__
on her difficult battle with
#LongCovid
❤️🩹
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"There are zero. ZERO approved medications for the treatment of Long COVID." -
@zalaly
THIS is why we must keep fighting to fund a
#LongCovidMoonshot
.
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California is getting some new
#LongCovid
billboards next week ✨
Let's keep up the political pressure to fund Long COVID research and get us all the treatment we need!
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Thank you to the senators of the HELP committee and all the advocates who helped make this
#LongCovid
hearing a success. The hearing made one thing clear: the urgent need for a moonshot initiative to fund research.
Read our full press release here:
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Four years of
#LongCovid
and not a single proven treatment. The lack of urgency in facing this crisis is appalling.
Join us in calling Congress March 14th and demand annual research funding in the BILLIONS.
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700,000 Americans are currently out of work due to
#LongCovid
. And they are undercounted, because many don't qualify for UI payments – the way to be "officially" counted as Unemployed in America. These systems are broken.
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In honor of Long Covid Awareness Day on March 15th, our website now features the diverse voices of our
#LongCovid
community.
Thank you for detailing your journeys & underscoring the urgent need for more research funding ❤️🩹
Share your story:
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"We must do everything we can to find potential treatments & cures for
#LongCovid
. In my view, there has been a lack of urgency in Congress, the federal government, and the medical establishment. to research and develop new treatments that might cure or lessen the impact..."
We cannot ignore the public health crisis that is Long COVID. On Long COVID Awareness Day, let us commit to doing everything we can to address this horrible condition. The U.S. government must do more to increase awareness and provide additional resources to develop treatments.
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2K
7K
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Thank you,
@SenSanders
and colleagues, for introducing a Resolution to designate March 15 as
#LongCovid
Awareness Day! 🩵
#LCAD24
#LongCovidAwarenessDay
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We’ve put together a guide to calling Senators on the HELP Committee in advance of the January 18 hearing!
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"There are no viable treatments or cures for this condition. I have seen 24 doctors from 5 different hospitals across two states. I have been to 8 emergency rooms, 3x by EMS. I have had hundreds of blood, imaging, and diagnostic tests. All at a personal cost of over $13,000..."
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“Fortunately, times are changing. No senator,
#Democrat
or
#Republican
, at the recent hearing questioned the medical reality of
#longCOVID
, perhaps because at least three senators, including …
@SenTimKaine
(D-Va.), have themselves suffered from it.”
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"they don't see the hours I am bed-bound each day nor the constant confusion and pain inside my head."
@MattyMaxwell
on his battle with Long Covid ❤️🩹
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This had us doing a double take: Only 7% of surveyed physicians were confident diagnosing
#LongCovid
, and a minuscule 4% felt confident treating it. We're gambling with our lives.... Would you put money on those odds? 🎲🎲
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"Having Long Covid is like being trapped alone for years (maybe forever) in a torturous maze and no matter how hard you try, you cannot escape." - Larissa
#LongCovidAwarenessDay
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@SenSanders
says LISTEN TO THE PATIENTS!! 👏
#LongCovid
research has been much too slow and unambitious. That has got to change.
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Thank you,
@SenSanders
, for your incredible opening statement, and for convening this critical hearing on
#LongCovid
.
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Give Congress a
#LongCovid
wake-up call!
On Thursday, March 14, we're calling our reps to demand a
#LongCovidMoonshot
—$1B+ in annual research funding to find treatment for the MILLIONS suffering without help.
Full call guide available our website 🚀
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We have had nearly 100 (🤯) people submit their
#LongCovid
stories & we are working as quickly as we can to create personalized graphics ❤️
Haven't shared yours yet? There's still time to submit it on our website.
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Severity of the initial infection is not related to whether you end up with
#LongCovid
. Anyone, of any age, class, or gender, can experience persistent, ongoing, or new-onset conditions.
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Thank you,
@SenMarkey
, for seeing and hearing us. Your words mean a great deal to Americans with
#LongCovid
who feel left behind. We look forward to Congress taking action! 🚀
Long COVID is real, it is disabling, and it is affecting millions. That's why we must fund long COVID and ME/CFS research to better understand and treat these conditions. To all those struggling and suffering—we see you, we hear you, and we will take action for you.
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We believe that an inclusive clinical approach will be of benefit to all of us suffering from Long Covid, as well as other IACCIs.
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"It is unacceptable to force people to fight their
#chronicillness
in a health system that doesn't recognize their illness.
We need to fund research on conditions triggered by viral infections that will drive us towards diagnosis, treatments and cures."
-
@SenMarkey
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DEADLINE EXTENDED 😱
We’ve just gotten word that Senators now have until FRIDAY, MAY 10TH to sign the FY25
#LongCovid
funding letter!
This means you still have time to contact your legislators and urge them to sign onto this crucial funding proposal.
Call guide on our site.
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“We just know people are suffering and we have to increase the sense of urgency…” Thank you for your words at
#HELPLongCovid
,
@SenatorBaldwin
!
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We recognize that science has so little to offer Long Covid patients partially due to decades of medical neglect of chronic conditions like ME/CFS, dysautonomia, and MCAS.
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Great piece in the
@nytimes
today highlighting the urgent need for bipartisan action on
#LongCovid
.
Gift link to read for free 👇
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Covid infections add up; after 3 or more infections, studies show that you're 2.6 times more likely to end up with
#LongCovid
.
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There’s still time to urge Congress to include
#LongCovid
in the FY25 budget, but we need your help!
Please take a minute to send a prefilled letter backing $1.2B+ in funding 👇
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Our website has a brand new, interactive call guide! It’s now easier than ever to find & contact your legislators to demand funding for
#LongCovid
.
Check it out:
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💔 Long Covid can make you fall out of love with life!
#LongCovid
is more than lasting effects. It's new and worsening symptoms for weeks, months, even years after infection. Which
#BadRomance
are you in? 💔
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We advocate for including comparator groups where appropriate and study of these conditions across triggers, which will bolster scientific efforts and lead to more comprehensive answers for all of us.
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We support the framework proposal outlined by
@SenSanders
and want to thank him for his efforts in giving this issue the attention it deserves. We hope that the HELP committee takes our feedback into consideration.
You can read our full response here:
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That's not a typo. The estimated economic cost of
#LongCovid
in the USA, over 5 years is USD $3.7 TRILLION. 💸💸💸
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In just the last few days, over 100 people have used our site to find their legislators' contact info!
Be sure to check it out our interactive call guide if you haven't already 🚀
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Senator Roger Marshall has a family member with Long COVID who was incapacitated for two years. Concerned that CDC is overly focused on vaccines rather than seeking to address Long COVID.
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TODAY'S THE DAY! 🚀
Call your legislators and demand research funding for
#LongCovid
.
Full guide on
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"I was an essential worker... I don't want to die of this." -
@YlanRoy
The way our governments have tossed aside essential workers is unacceptable. We need to fund
#LongCovid
research NOW.
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🚨 ONE DAY LEFT 🚨
Call Congress to demand Long Covid funding in the FY25 budget!
Full guide on our website.
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Early testing and treatment are critical for preventing further transmission and improving health outcomes after an infection.
Please join us in demanding the NIH bring back this lifesaving program!
Lifesaving Home
#Test2Treat
aimed to reduce disparities for most at-risk people, with FREE tests, telehealth & treatment for COVID & flu. But it just ended, though 100 million people are eligible. Sign letter to NIH to fight for it.
#CovidIsNotOver
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Couldn't agree more, Bernie!
The fight against long COVID is not just a medical one. It is a moral one.
Long COVID can have devastating consequences and too many people now face debilitating symptoms as a result.
How many Americans need to suffer before Congress acts boldly to address this crisis?
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The urgency of
#LongCovid
is beyond words. We need dedicated, long-term funding for ambitious research, incorporating yet far beyond what we already know – we need a
#LongCovidMoonshot
.
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@SenSanders
Thank you
@SenSanders
for convening this hearing. We desperately need to fund a
#LongCovidMoonshot
.
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We're receiving so many heartfelt – and heartbreaking –
#LongCovid
stories to prepare for next week's Long Covid Awareness Day. 🖼️🖼️ Visibility matters! Keep them coming! Submit a short text and an optional photo to (also linked on our website)!
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Let’s start with the messy reality: the biology of Long Covid is not yet fully understood, but we are hopeful that this funding will help uncover root cause(s).
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#LongCovid
can happen to anyone, but everyone doesn't receive the same belief, understanding, or treatment. That's wrong, say
@SenTimKaine
& colleagues:
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If you live in a red state, we need your help: please call & write your Senators TODAY for
#LongCovid
funding.
Would be huge to have bipartisan support for this proposal 🙏
DEADLINE EXTENDED 😱
We’ve just gotten word that Senators now have until FRIDAY, MAY 10TH to sign the FY25
#LongCovid
funding letter!
This means you still have time to contact your legislators and urge them to sign onto this crucial funding proposal.
Call guide on our site.
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We just surpassed 1,000 total letters sent from over 500 individuals—all backing the FY25
#LongCovid
budget proposal.
Thank you all for your support, let's keep up the momentum!
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We’re running out of gas with the live tweeting. Thanks,
#LongCOVID
. Shout out of
@betsyladyzhets
and
@patientled
who are also live tweeting! If you need to follow the hearing and can’t watch/listen, follow them!
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Surprising, but true:
#LongCovid
has a 60% greater disease burden than heart disease or cancer.
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Senator
@RogerMarshallMD
, we're so grateful for your sharing your personal experience with
#LongCOVID
. By now, we all likely know someone suffering. Support for American families affected by this terrible condition can't come soon enough. 🙏
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But our campaign doesn't end there! Through May 14th, we will be continuing to call our legislators to include funding for Long Covid research in the FY25 budget.
We also have an email template you can use in addition to calling!
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SHARE YOUR
#LONGCOVID
STORY – send in your story & an optional photo, and we'll create a graphic!
Submit by Wednesday March 13 to be ready for Long Covid Awareness Day on March 15. 🚀
Visit our website, or click the link:
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It is vindicating to see Long Covid’s ongoing tragedy of millions remain in the public eye, alongside the painful memory of everyone lost to Sars-COV-2 so far. Praise to
@SenMarkey
and
@SenWarren
for seeing us — let’s do something about it. 🚀
I am proud to lead the call to designate the first Monday of March as COVID-19 Victims Memorial Day with
@SenWarren
. With more than a million Americans lost to COVID-19 and millions still battling the effects of long COVID, we must honor them by working to prevent more tragedy.
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Send Congress a message: we need
#LongCovid
funding in the FY25 budget!
Time is running out, but Senators can still sign onto a letter supporting $1.2B+ in funding.
It takes less than a minute to support this proposal👇
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Thank you
@PattyMurray
for attending the
#LongCovid
hearing and learning about the urgent need for funding.
Long COVID is a serious, life-altering condition, and one we are still learning more about every day. At
@HELPCmteDems
hearing, I stressed my continued push for more funding, research, & public health infrastructure to better understand and treat Long COVID.
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Here are the key dates & facts to remember.
We know it sounds like a lot, but our interactive call guide on the website makes it super simple!
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#LongCovid
can affect anyone – even Senators. We're grateful that our elected representatives, like
@SenTimKaine
, recognize the difficulty of being taken seriously and believed when pursuing medical care.
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Thank YOU
@MichaelPelusoMD
for your tireless work on getting to the bottom of
#LongCovid
❤️
@LisaAMcCorkell
@SenSanders
@LCMoonshot
This is a big deal! Grateful to
@LisaAMcCorkell
@SenSanders
@LCMoonshot
.
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The HELP Committee hearing on January 18 is open to the public and we encourage all (who are able) to attend and connect on this thread! The hearing will be in the Dirksen Senate Office Building room 430 (SD-430). Doors open at 9:45am ET. Arrive early to get through security!
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.
@SenSanders
on
#LongCovid
: “For far too many people who were previously healthy who were leading healthy and productive lives find themselves bedridden.” Notes this can continue for weeks, months and even years.
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Long Covid patients & allies, it’s time to call on our Senate H.E.L.P. Committee to address Long Covid!
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@SenTinaSmith
, thanks for your engagement at
#HELPLongCovid
! We really appreciated your recognition that insurance rarely covers off-label drugs for
#LongCovid
.
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Four years…..still here. Where do we go in 2024? Join us for a
#LongCovid
conversation wrapping up
#LCAD24
, hosted by
@dsethlewis
and
@MamaSitaa__
🚀
Set a reminder for my upcoming Space!
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“Long COVID stripped away my daughter’s life as she knew it…instead of looking forward to her high school graduation, she’s now slowly working towards her GED from home.” - Nicole Heim
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Doctor and senator
@BillCassidy
’s professional experience informed his understanding of
#LongCovid
:
“….this is something which can be devastating for someone. They feel like there's something out of their control dictating their life...”
#HELPLongCovid
#Louisiana
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Want to take a Fast Action today? Email
@nytimes
a thank-you for their recent
#LongCovid
op-ed; this will encourage more coverage! Details & repostable social media graphics here ➡️
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“The medical neglect I experienced contributed to the disability I’m experiencing now.” -
@ItsAngInLA
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Finished making your
#LongCovidMoonshot
calls and want to boost your impact? Spread the word!
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We're lifting up asks for
#LongCovid
funding this FY2025 Appropriations cycle. But what is Appropriations? Read on for a quick explainer!
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So grateful that Dr.
@zalaly
was in the House for
#HELPLongCovid
. His is the type of guidance we need for the urgency of the issue. 🚀
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Friends, family, and loved ones experiencing
#LongCovid
bring the reality home – anyone can be struck by it.
@SenatorHick
, thank you for sharing how it has touched people you know, and for your attention to its urgency! 🙏
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You can see our full response to Bernie’s Moonshot proposal on our website:
Or you can read our summary thread below 👇
We are grateful for
@SenSanders
leadership on
#LongCovid
. We enthusiastically support his Moonshot proposal, which we believe will greatly benefit the millions suffering with this condition.
We just sent his team our feedback, and wanted to share our thoughts with you all.
🧵
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"US Senators get believed, you know...but so often with women, that's not the case... with minorities, that's not the case... with young people, it's not the case. Doing a [
#HELPLongCovid
] hearing like this is a way of sending a message that people are believed." -
@SenTimKaine
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.
@SenSanders
: “Let us be clear, the symptoms of Long COVID are not minor inconveniences…LC can affect anyone who has experienced Long COVID.”
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"...we need better information, we need better care, we need better treatment...
#LongCovid
is a serious, life-altering condition." – Senator
@PattyMurray
truly understands the urgency of this crisis!
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Angela calls out
#MECFS
in her remarks and mentions how the fact that she works full time with pacing means she can’t do much else.
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