Again, deep gratitude to @michaelpelusomd.bsky.social for your constant research for & engagement with the patient community. To donors: this is a critical moment to sustain & grow #LongCOVID advocacy. Let's help patient advocates move from bootstrapping to global collaboration at scale. 5/5
One government & a handful of donors won't solve #LongCOVID. From EU to Gulf States donors, UN to G20, multilateral funds to traditional global health foundations who haven't yet come to the table—our Long COVID advocacy must be a GLOBAL call for GLOBAL strategy & solution. 4/x
As @michaelpelusomd.bsky.social shared: "We need to plan for the long game." @lccampaign.bsky.social believes #LongCOVID advocacy must now organize to GO GLOBAL—as otherwise work will continue to be delayed & diffused, when need acceleration & efficiency to best serve ALL patients & communities. 3/x
@lccampaign.bsky.social call to action: "Clinicians, researchers, nonprofit partners, donors, regulators, patients & advocates around the world need to gather to develop a specific, time-bound 'Global Long COVID Roadmap', w/funding goals, scientific goalposts & clear multi-year strategy" 2/x
We need a #GlobalLongCOVIDRoadmap. No global health concern—from malaria to TB, HIV/AIDS to polio—has successfully mobilized research funding, accessible treatment or achieved scientific breakthroughs at the scale & pace needed without an international effort. #Keystone
A big thanks to #Keystone Scientific Organizer @virusesimmunity.bsky.social for all your care & intention in today's opening session on reenforcing importance of masking, testing & welcoming #LongCOVID patients to the symposium. Grateful for your leadership & thoughtfulness to the community.
Look, when our @erubie.bsky.social is in the room, senators are going to know the Long COVID community was present & is asking for their support! Thanks for jumping in yesterday, flying the flag & being such a key part of our Long COVID Campaign team. #disabledwomenFTW
A selfie of seven Long COVID advocates sitting in a row in a U.S. Senate hearing room. They are all wearing masks and Long COVID teal shirts.
EDS/HSD Awareness Month Day 1: Starting things off by resharing a picture from yesterday, when I had the opportunity to represent @lccampaign.bsky.social & join LC advocates in attending Senator Collins & @murray.senate.gov's bipartisan appropriations hearing on biomedical research. 1/x
I wanted to break down yesterday's Senate Appropriations medical research hearing & why matters to so many of us individually & as a community. And most importantly, the opening to work with bipartisan Hill leaders on #LongCOVID research funding. Let's decide to keep contending for all of us. 3/3
BlueSky still only allows short videos, so had to cut into 3 chunks & generate new caption files for accessibility for each video, so took more spoons than I had yesterday after being on The Hill! I know many folks in our community not on Twitter, so wanted to share some encouragement here too. 2/x
If you also need a #LongCOVID dose of hope, a message from Washington DC. Thanks from @lccampaign.bsky.social to every patient & advocate who brought our community to the Hill yesterday. Working together across the aisle, Sen. Collins & @murray.senate.gov opened a door for US patients & families 1/x
“It's only been because of solutions and options that other patients online have shared with me, and I'm so thankful for that patient community because otherwise I would still be bed bound.” @meighanstone.bsky.social @lccampaign.bsky.social nebraskapublicmedia.org/en/news/news...
📣 #LongCOVIDCommunity: Back after NIH grant reinstatement crash, as time to organize again! Are you in DC area & want to join @lccampaign.bsky.social this Weds April 30 1030am at Sen. Collins & @murray.senate.gov bipartisan medical research hearing? appropriations.senate.gov/hearings/bio... 1/x
Photo of main stage at today's @politico.com #POLITICOHealth Care Summit, with Politico White House Bureau Chief Dasha Burns interviewing Special Government Employee Calley Means, a senior advisor to HHS Secretary Kennedy.
Thank you Calley Means for your generosity in speaking with me today as a patient & disabled #POLITICOHealth Summit attendee, to share @lccampaign.bsky.social gratitude for Sec. Kennedy & NIH Director Dr. Bhattacharya #LongCOVID commitments & preserving critical NIH clinical trial research & staff.
Thanks @thesicktimes.bsky.social @betsyladyzhets.bsky.social @mileswgriffis.bsky.social for your reporting on #NoLongCOVIDCuts advocacy. Grateful coverage shouted out #LongCOVID bipartisan Hill supporters & uplifted the patient outreach that made #RECOVER grant restorations today possible. #teamwork
Big win for the Long Covid community -- grants restored. Also hearing other cancelled biomedical grants are getting restored. Maybe raising a ruckus works? Via @thesicktimes.bsky.social @betsyladyzhets.bsky.social thesicktimes.org/2025/03/28/u...
Thanks @rowanwalrath.bsky.social for coverage & including @lccampaign.bsky.social: "Long COVID patients are grateful to bipartisan leaders Sen. Young, @kaine.senate.gov Chair Cassidy @sanders.senate.gov for their partnership on preserving these critical NIH grants..." cen.acs.org/policy/resea... 1/x
🚨THANK YOU #LONGCOVID PATIENT COMMUNITY 🚨 Because of you, NIH RECOVER grant terminations being reversed & restored! This win was only possible due to YOUR advocacy & support from our Hill bipartisan champions! THANK YOU to every person who called, emailed & took action! #NoLongCOVIDCuts
Thanks so much for sharing this, we appreciate it and you! Grateful for you advocacy and work to support the patient community.
US friends please call your reps 😭🙏 the only hope for saving these grants 🕯 bsky.app/profile/lcca...
Thanks so much for sharing our #NoLongCOVIDCuts campaign tools! There's a call script & email template to make outreach easier w/energy & function limits, but is also editable so any patients, caregivers & supporters can share their own stories & requests. We honor all patient needs & experiences. ♿
🚨BREAKING: NIH RECOVER #LongCOVID GRANT CUTS HAVE STARTED🚨
The next 2⃣ DAYS critical to tell Congress #NoLongCOVIDCuts to clinical trials & clinic funding.
Can you make just 3⃣ calls & send 3⃣emails today?
☎️Call Congress Tool
bit.ly/NoLongCOVIDC...
📨Email Congress Tool
bit.ly/NoLongCOVIDC...
Thank you for sharing our #NoLongCOVIDCuts tools and campaign! It means so much and we're grateful for your advocacy for the patient community.
🚨 Long Covid funding is at risk! 🚨
Nobody is safe,Long Covid doesn’t discriminate.It could happen to you or someone you love.
Please take 2 minutes to call your rep.& demand they keep Long Covid research funded.
📞 Call now: win.newmode.net/longcovidcam...
#LongCovid #NoLongCovidCuts
Thank you for sharing our campaign tools, we're hearing every single phone call and email to the Hill matters profoundly right now. Thanks in advance for any spoons!
Another action to support #LongCovid. This one includes a phone call kit.
#NoLongCovidCuts!
TY @smith.senate.gov for already responding to my outreach & message this morning expressing concern following yesterday's announcement.
Please complete if spoons and time permits, it only took a few minutes to reach out. Thank you to all who have.
Thank you so much for taking action & using your precious energy to call for Congress to protect Long COVID funding 💙
I've called all my city and state reps to say #NoNYMaskBan, so now I am calling my congressional reps to say #NoLongCOVIDCuts. @lccampaign.bsky.social has made it really accessible to do so with the tools below. You don't even have to speak to someone if that's not your thing!
Image of teal, positive-sign Long COVID Campaign logo overlayed on the U.S. Capitol building of Congress with text: "Action Alert: Long COVID funding at risk, action incoming"
The next 3⃣ DAYS are critical to ensuring #NoLongCOVIDCuts to U.S. government #LongCOVID clinical trials & clinic funding.
Can you make just3⃣ calls & send3⃣ emails to Congress today?
☎️Call Congress Tool☎️
bit.ly/NoLongCOVIDC...
📨 Email Congress Tool📨
bit.ly/NoLongCOVIDC...
