Emily Rubenstein

EDS🦓 endo💛 Long COVID ally🩵

[Emily Rubenstein @emrubenstein]

You can follow @DREDF's instructions, which provide template language and step-by-step screenshots for how to submit comments.

Keep making your voices heard. Keep showing what democracy looks like!💪🇺🇲

[Emily Rubenstein @emrubenstein]

Want to keep the energy going from this weekend? Take this tangible action!

Submit comments by Monday, June 16, at 11:59 pm ET to oppose DOE's attack on Section 504 and accessibility in the built environment.

https://t.co/QRp6grIrT6

[Emily Rubenstein @emrubenstein]

DOE is currently trying to rescind parts of Section 504 that require recipients of federal funding to ensure new construction and any alterations are fully accessible as well as requirements for transition plans to eliminate access barriers in existing facilities.

[Long COVID Campaign @LCCampaign]

#LongCOVID researchers: TOMORROW Weds May 28 12-1pm ET CDMRP webinar on funding opportunities via Peer Reviewed Medical Research Program, now that patient advocacy resulted in Long COVID added as research topic! DEADLINES COMING FAST: Letter of Intent June 9, Application July 21.

[Emily Rubenstein @emrubenstein]

@G_A_grandsong @meighanstone @LCCampaign For anyone in a position to support @LCCampaign financially, you can donate here to support ongoing #LongCOVID advocacy work: https://t.co/cbC5QzvZo7

To stay updated on LCC work & ways to get involved, follow @LCCampaign!

[Emily Rubenstein @emrubenstein]

Coverage of @SenBillCassidy's question to @HHSGov @SecKennedy to kick off the hearing covered by @thesicktimes: https://t.co/IznQvBujcg

[Emily Rubenstein @emrubenstein]

Grateful to @SenBillCassidy for keeping the pressure on during Wed's HELP hearing on FY26 @HHSGov budget! Those in Louisiana: please take a min to share your thanks for his work to make LC the very first topic of this hearing!

Call: 202-224-5824
Message: https://t.co/wvSOBpg9BS

[Mike Hoerger, PhD MSCR MBA @michael_hoerger]

5) I told him they need to keep the pressure on. It is vital to people already with #LongCOVID. It is vital to people with #cancer and other serious conditions. It is vital to people without serious conditions who too may develop Long COVID.

[Long COVID Campaign @LCCampaign]

THANK YOU to every #LongCOVID patient, caregiver & loved one, from red & blue states, for calling, emailing & meeting with Congressional leaders to share #LongCOVID research is a bipartisan priority. Today's Senate HELP hearing testimony is a result of your engagement & outreach.

[María Richardson @_diatoma]

For folks asking "What can I do to help #pwME?", here's an Action Bingo for #MEAwarenessMonth ❤️.

Comment below when you've covered one or many of these boxes so I can rejoice with you! (1/4)

#MillionsMissing #WorldMEDay #DisabilitySOS #GreatestMEdicalScandal

[dianna haze @diannahaze]

This is me—before and after becoming bed bound with Long COVID and ME/CFS. Two years ago, I made videos on YouTube. I ran half-marathons. I traveled. I lived fully. Then my body collapsed. I lost my energy, my independence, and my ability to connect. I lost my life.

This illness isn't "just fatigue." It's a devastating, invisible disease that left me in a dark room, unable to sit up, talk, or tolerate light and sound.

But slowly—very slowly—I'm starting to improve. Each small step feels like a quiet victory.

Please listen. Please learn. Please share.

#MECFS #MillionsMissing #MEAwarenessDay #MECFSAwarenessday

[Long COVID Campaign @LCCampaign]

📣Long COVID Patient Community Win News📣 Due to YOUR patient advocacy, #LongCOVID researchers can now apply FOR THE FIRST TIME for funding via the FY25 $150 million U.S. government CDMRP Peer Reviewed Medical Research Program! Why does this matter for researchers & patients? 1/x

[Emily Rubenstein @emrubenstein]

Grateful to these two for using their precious spoons to continue advocating for the #LongCOVID community❤️💪

[Long COVID Campaign @LCCampaign]

THANK YOU #LongCOVID patient & renowned cellist & composer @joshua_cello for hitting the Hill today with LCC to meet Republican champions & leaders in Congress. We shared FY26 research & care needs, clinical trial priorities & why Novavax fall booster critical option for so many.

[Meighan Stone @meighanstone]

📣#LongCOVID Community📣 Looks like Senate HELP Committee @GOPHELP @HELPCmteDems will now have @SecKennedy testify at FY26 HHS budget hearing on Wednesday, May 14 at 1pm ET. Would you come to Washington DC to attend this critical hearing with @LCCampaign? https://t.co/2dPHg2iuX1

[Long COVID Campaign @LCCampaign]

📣#LongCOVID Community📣 We haven't seen this anywhere else yet: May 14 Senate HELP Committee hearing now scheduled with @SecKennedy on FY26 HHS budget. Patient & caregiver roll call: would YOU want to attend in Washington DC to help rep our community? cc @statnews @thesicktimes

[Emily Rubenstein @emrubenstein]

EDS Awareness Month Day 4: Flare day. Cancel plans I had been looking forward to for weeks day. Rest day.

@TheEDSociety

[Emily Rubenstein @emrubenstein]

I also illustrated the less-than-straight path to finally getting my hEDS diagnosis at 29. This diagnostic delay is all too common for people with EDS. Full talk: https://t.co/nusDNx62ME

@TheEDSociety

[Emily Rubenstein @emrubenstein]

EDS Awareness Month Day 3: In 2023, @TheEDSociety invited me to share my diagnostic journey with reps from @US_FDA. Part of that talk included my own baseball-style diagnosis stats.

[Emily Rubenstein @emrubenstein]

Age at Dx: 29
Age I was first told I was hypermobile: 12
# Specialties Seen: 16+
# Specialists Seen: 22+
# Drs who suggested I might have EDS/be on hypermobility spectrum but didn’t diagnose &/or told me I didn’t have hEDS: 3
Time between 1st mention of EDS to diagnosis: 1.5 yrs

[Emily Rubenstein @emrubenstein]

Thank you to all the healthcare workers who continue to keep us safe by masking😷❤️

[Emily Rubenstein @emrubenstein]

EDS Awareness Month Day 2: Boarded my flight home from DC. My @readimask caught the eye of a woman wearing a surgical. She asked about it & shared that she works in a hospital & many provided masks don't fit her. I gave her a ReadiMask to try & thanked her for still masking❤️💪

[Emily Rubenstein @emrubenstein]

@readimask N95s have been a game changer for me because my EDS & cervical instability can't handle the straps of other N95s. If you're interested in trying ReadiMask, @AlliantBiotech gave me a reusable sharable link: EMILY251Z4VFO

@TheEDSociety