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Meighan Stone Profile picture
@meighanstone
Apr 17 • 4 tweets • 2 min read • Read on X
📣GREAT NEWS📣 Just spoke to Hill champions: your hundreds of calls & emails are making such a difference, they've extended deadline for Senator sign-on to #FundLongCOVID Dear Colleague letter to MONDAY APRIL 20 10am ET! More @LCCampaign details incoming, senators now signed: 1/x
@LCCampaign Along with FY27 #FundLongCOVID letter leads @SenMarkey @SenTimKaine @SenDuckworth, these senators have now signed on too: @Sen_Alsobrooks, @SenBooker, @SenAmyKlobuchar, @SenatorLujan, @SenAlexPadilla, @SenAdamSchiff, @SenTinaSmith, @SenWarren, @SenPeterWelch, & @SenWhitehouse 2/x
@LCCampaign @SenMarkey @SenTimKaine @SenDuckworth @Sen_Alsobrooks @SenBooker @SenAmyKlobuchar @SenatorLujan @SenAlexPadilla @SenAdamSchiff @SenTinaSmith @SenWarren @SenPeterWelch @SenWhitehouse 📣📣📣#LongCOVID Community, with deadline extended, let's keep the emails & calls going! These Senators signed the FY26 #FundLongCOVID letter last year, but haven't yet this year: @gillibrandny, @SenatorAndyKim, @SenatorWarnock, @RonWyden. Let's try & grow the list for FY27! 3/x
@LCCampaign @SenMarkey @SenTimKaine @SenDuckworth @Sen_Alsobrooks @SenBooker @SenAmyKlobuchar @SenatorLujan @SenAlexPadilla @SenAdamSchiff @SenTinaSmith @SenWarren @SenPeterWelch @SenWhitehouse @gillibrandny @SenatorAndyKim @SenatorWarnock @RonWyden Links again for our free, customizable @lccampaign tools to ask YOUR SENATORS to sign-on to the $210+ million #FundLongCOVID FY27 Appropriations letter:

📞 #FundLongCOVID Senate call tool: tinyurl.com/LongCOVIDCall

☎️#FundLongCOVID Senate email tool: tinyurl.com/LongCOVIDEmail 4/x Image

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More from @meighanstone

Meighan Stone Profile picture
Sep 25, 2025
What's it like to travel to #UNGA80 as a disabled person to advocate at the UN? I was quietly waiting to board the train as a wheelchair user & a woman starts shouting & praying in tongues that I "MUST GET UP & WALK". I'm a person of deep faith. This is ableism, not religion. 1/x
It's trying to attend UN networking events on issues impacting chronically ill & disabled folks—with no elevator or thought of accessibility. It's swallowing your pride as carried up stairs with your wheelchair, still trying to engage after the resulting tachycardia episode. 2/x
It's an @AmtrakAlerts conductor you didn't even ask for help smirk & say: "If you're dying, you should pack less" & mock you to other passengers as you explain your suitcase is heavy due to medical supplies. This is me rolling that same suitcase—by myself—across Times Square. 3/x Selfie minutes after an Amtrak conductor publicly mocked me to other passengers for having a heavy suitcase due to having to travel with critical medical supplies. Somehow, I'm managing the exact same suitcase, by myself as a wheelchair user, rolling across Times Square to get to my hotel in NYC for UNGA meetings the next morning.
Read 6 tweets
Meighan Stone Profile picture
Sep 18, 2025
#HHSLongCOVID livestream has started. In just first few minutes, @SecKennedy has announced this meeting is indeed the "kick off" of a new "Long COVID Consortium", cited HIV/AIDS patient efforts like Dallas Buyers Club & repeated his personal family connection to Long COVID. 1/x
@SecKennedy @RogerMarshallMD speaks about his own son with #LongCOVID, cites Drs. Vaughn, Patterson & Redfield as contributors to his son's care. 2/x
@SecKennedy @RogerMarshallMD @DrMakaryFDA: "Long COVID is real," then says "nothing" achieved by NIH with over $1.5B in funding, expresses commitment to working on this challenge. 3/x
Read 22 tweets
Meighan Stone Profile picture
Sep 4, 2025
Here at @SecKennedy Senate Finance Committee hearing where @SenToddYoung again just raised needs & concerns of #LongCOVID patients & how best can collaborate with Sec. Kennedy & Trump admin on research, treatment, ARPA-H efforts, pharma trial speedbumps & global collaboration 1/x A photo of Senator Todd Young (R-IN) at today's Senator Finance Committee hearing, asking HHS Secretary Kennedy about Long COVID research funding, clinical trials progress, global efforts and pharma barriers to research studies.
@SecKennedy @SenToddYoung Sen. Young: I'm going to begin with Long COVID, it shouldn't be a surprise to you. During each of our meetings, we've discussed my interest in making sure our government does its part to address this challenge which afflicts by most recent estimates, over 20 million Americans 2/x
@SecKennedy @SenToddYoung Sen. Young: ...they have been diagnosed. There are a number of others we know that go undiagnosed. Over 400 million people worldwide suffer from this [Long COVID] at a cost of $1 trillion a year, which is roughly 1% of global GDP... 3/x
Read 18 tweets
Meighan Stone Profile picture
Jan 22, 2025
Washington DC Flag: Recommend wait 48-72 hours before fully engage on HHS/subagency news. ALL news will benefit from additional reporting in this evolving environment.
Assume best? Transitions messy, give it a minute
Assume worst? Take time to confirm & strategically respond
1/x
Don't underestimate impact of CONFUSION currently. Professional agency staff in midst of big, quick changes, rumors--would rather FREEZE than risk at odds w/new admin appointees & leaders. New appointees often issue guidance without clarity professional staff need & expect.
2/x
Don't forget most senior folks RUNNING these agencies literally just left COMPLETELY. Transition & "landing teams" been in place, but a ton of acting & non-Senate approved folks put in place Monday via executive orders don't know USG byzantine & bizarre ways of working yet. 3/x
Read 7 tweets
Meighan Stone Profile picture
Nov 17, 2024
#LongCOVID Community: As been tagged into few Trump Admin health nominee discussions, I thought to share brief, non-partisan "state-of-play" backgrounder thread, with focus on *REALISTIC* advocacy openings, as so many of us have serious limits & don't want to waste precious🥄 1/x Photo of a vintage postcard that reads: "Greetings From Washington D.C." and features illustrations of the U.S. Capitol, White House, Lincoln Memorial and Jefferson Memorial.
Disclaimers first: Pre-COVID, did health & nonprofit advocacy 20+ years, grateful for dear colleagues both sides of aisle & my default: always try to work together but focus on REALISTIC openings if limited resources. As ever, you may be smarter or have better ideas, so YMMV 2/x
Trump health nominees TLDR: whether adore or abhor, my candid counsel is don't waste much effort thinking could change names. Why? Senate leaders will only QUIETLY, behind-the-scenes, be able to change or block a few of OVERALL admin nominees & sadly, health not top of list. 3/x
Read 8 tweets
Meighan Stone Profile picture
Aug 2, 2024
📣#LongCOVID Community 📣 Senate Appropriations Committee just posted FY25 Labor-H and Defense bills and report text, reviewing now, will post notes & flags in this thread after parse through documents: 1/xappropriations.senate.gov/hearings/full-…
Starting with "win" in Defense FY25 bill report: we got Long COVID added for the first time to the Peer-Reviewed Medical Research Program! This means researchers can access a pool of $370 million in funding. MECFS also made it as an approved condition to access these funds. 2/x
Image
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OK, somewhat hilariously, the @SenateApprops page isn't working properly! Someone put these FY25 LHHS docs up, headed for the exits for that sweet, sweet Recess vacay & we got a Senate 404 error folks! Think just tricked it into getting text anyway! Reviewing... 3/x Image
Read 26 tweets

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