Executive Director, @LCCampaign ♿ Coauthor "AWAKENING: #MeToo & Global Fight for Women's Rights". Past: President @MalalaFund, Fellow @CFR_org & @Harvard
Aug 2 • 26 tweets • 9 min read
📣#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
May 17 • 23 tweets • 9 min read
#LongCOVID Community Organizing 🧵How you can take action for Thursday's Senate NIH funding hearing:
📣Advocate stipends to come to DC
📣GoFundMe to help advocates attend
📣How to submit YOUR testimony to Congress!
📣How to request Senators ask NIH about Long COVID at hearing
1/x
📣Just like January #HELPLongCOVID hearing, we want to pack the Senate NIH hearing room with diverse group of #LongCOVID advocates. I've pledged up to $5K in patient travel stipends & @lcccampaign media support. Quick 10-Question stipend application: 2/xforms.gle/sPVBBkqTwSBPta…
May 16 • 12 tweets • 4 min read
🚨 NIH FY25 Senate Appropriations Hearing Now Confirmed for May 23, 2024 🚨 Why does this hearing matter so much for the #LongCOVID community & why am I donating patient-advocate travel stipends to come to DC again & organizing via @LCCampaign? A 🧵 1/x appropriations.senate.gov/hearings/a-rev…
@LCCampaign This May 23 NIH Senate FY25 Appropriations hearing is one of the VERY FEW public moments before the election when the #LongCOVID patient community can organize & call for Congress & NIH leaders to better respond to urgent need for expanded & accelerated research & treatment. 2/x
Feb 14 • 12 tweets • 4 min read
THREAD: @NIHDirector announced "investing an additional $515m USD" over 4 years today in #NIHRECOVER. So what does this release say or not say & what does this mean for the #LongCOVID community? Sharing my humble take, if any of this resonates with other patient advocates. 1/x
@NIHDirector First, the political positioning: today's @NIH RECOVER funding announcement clearly planned to temper @CDCgov staff (likely also planned) leak will change 5-day COVID isolation guidance, imperiling vulnerable & disabled folks & perpetuating pandemic 2/xwashingtonpost.com/health/2024/02…
Jan 13 • 4 tweets • 1 min read
#LongCOVID community: Folks have shared they can't attend Jan 18 Senate #HELPLongCOVID hearing in Washington DC but want to donate to help other disabled & chronically ill advocates attend & organize. There's now a GoFundMe up, if you want to chip in: 1/xgofund.me/34330e95
I'm not an entity or non-profit, just part of an informal group of disabled & chronically ill folks open-source organizing with our own spoons & pennies. As so many of us are on limited incomes, I wanted to make sure anyone who feels able to give has donation transparency, so 2/x
Jan 8 • 22 tweets • 6 min read
For other #LongCOVID folks, I’m nearing end of COVID reinfection acute phase & thought I’d share my experience & some resources for other chronically ill or disabled folks. This COVID reinfection has been a rough ride– this new variant took me down fast, hard & severely. 1/x
#1: DON'T TRUST ABLE-BODIED PEOPLE WITH YOUR HEALTH WITH THIS SURGE & VARIANT. Dear friends let a sick & symptomatic person join a 10-person holiday celebration, despite knowing I’m immune compromised with Long COVID. Me & my son got COVID after always masking the last year. 2/x
