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

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

As ever, we're at the ready at @lccampaign.bsky.social to answer any questions, lend support, or be your accommodations pit crew to help make attending this Senate hearing possible if you're based in greater Washington DC area or nearby! Feel free to email us: info@longcovidcampaign.org ♿️ 5/5

If you want to have your experience as a #LongCOVID patient included, but aren't in DC area: you can contact your U.S. Senators to share a statement for the record before this Wednesday. Any statements have to be submitted to the Senate Approps Committee by a Senate office! 4/x

As this Wednesday's Senate hearing isn't focused on #LongCOVID, but is still a critical moment to be present as a patient community at one of the first bipartisan Appropriations hearings on U.S. medical research funding, we encourage those in local DC area to consider attending! 3/x

Patients are organizing to attend this bipartisan Senate hearing together to ensure #LongCOVID community needs continue to be front & center! @lccampaign.bsky.social can provide a "Long COVID teal" tshirt (or wear you own) & advocacy stipends for any LOCAL transport / accessibility needs 2/x

[cont'd] "HHS Sec. Kennedy & NIH Director Bhattacharya action today on RECOVER research funding will make a powerful difference for the over 17 million Americans with Long COVID, especially pediatric patients.” cen.acs.org/policy/resea... 2/2