Thank you @michaelpelusomd.bsky.social for closing your #Keystone Long COVID opening keynote by highlighting the crucial role of collective community #LongCOVID advocacy efforts & sharing @lccampaign.bsky.social call to action: the urgent, critical need for a "Global Long COVID Roadmap" 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

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.

📣#LongCOVID Community: Just checked Office of Long COVID Research & Practice website for a resource—looks like HHS just removed nearly all content, replaced by minimal page. Hearing on Hill: may be critical time for patients to ask leaders to protect current RECOVER & AHRQ funds.

Packed first #HHS Secretary #RFKJr Senate nomination hearing now, miraculously got in after hours waiting. In back row wheelchair seating, only a handful visibly disabled people in room, hoping more here w/invisible illness. Other disabled attendees say can't see or hear in last row here. #LongCOVID

I was just minding my own business tonight, in my #disabled body. And then another Christian sent me, with no comment or explanation, an unsolicited video allegedly of a paralyzed wheelchair user who was "miraculously healed". To my fellow Christians: our disabled bodies are not prayer requests.

#LongCOVID Community: Some folks have reached out about making an end-of-year, tax-deductible donation to @lccampaign.bsky.social. If you feel able to chip in too, every donation counts! We have big plans for 2025, but can only realize them with support: tinyurl.com/LongCOVIDCam... 🙏🏾🙏🙏🏽 1/x