@emrubenstein

EDS🦓 endo💛 Long COVID ally🩵

 Washington, DC
Joined February 2017
  • Tweets219
  • Following234
  • Followers526
32Media
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. dredf.org/action-alert-doe-c…

Tell the Department of Energy to Stop Attacking Civil Rights and Section 504 - DREDF

dredf.org
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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.
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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!💪🇺🇲
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#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.
Invite graphic to a CDMRP "Lunch and Learn" webinar for researchers on May 28 from 12pm-1pm ET, announcing funding opportunities for six programs, including the "Peer Reviewed Medical Research Program", that due to patient advocacy, Long COVID research now qualifies for as a research topic! A recording of the webinar will also be available after the event using the meeting link.

ALT Invite graphic to a CDMRP "Lunch and Learn" webinar for researchers on May 28 from 12pm-1pm ET, announcing funding opportunities for six programs, including the "Peer Reviewed Medical Research Program", that due to patient advocacy, Long COVID research now qualifies for as a research topic! A recording of the webinar will also be available after the event using the meeting link.

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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: cassidy.senate.gov/contact/g…

Get In Touch | U.S. Senator Bill Cassidy

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cassidy.senate.gov
Mike Hoerger, PhD MSCR MBA
@michael_hoerger15 May 2025
Replying to @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.
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Coverage of @SenBillCassidy's question to @HHSGov @SecKennedy to kick off the hearing covered by @thesicktimes: thesicktimes.org/2025/05/14/…

Secretary Kennedy promises to support Long COVID treatment research in Senate hearing, says son is...

Long COVID was at the top of legislators’ priority list during today’s Senate Health, Education, Labor, and Pensions (HELP) Committee hearing with Health Secretary Robert F. Kennedy Jr. Senator Bill...

thesicktimes.org
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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.
Meighan Stone
@meighanstone14 May 2025
BIG #LongCOVID MOMENT here at Senate HELP FY26 HHS Hearing: Chair @SenBillCassidy first question to @SecKennedy, after noting ME/CFS & Office for Long COVID Research & Practice closure: @SenBillCassidy: "I talk to people for whom Long COVID is seriously impacting their life." 1/x
Photo of Senate HELP Chair Cassidy (R-LA) presiding and asking opening questions to HHS Secretary Kennedy on the President's FY26 budget request

ALT Photo of Senate HELP Chair Cassidy (R-LA) presiding and asking opening questions to HHS Secretary Kennedy on the President's FY26 budget request

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Emily Rubenstein retweeted
María Richardson@_diatoma11 May 2025
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
Bingo board titled #MEAwarenessMonth 2025 ACTION BINGO With an illustration of a diatom and a piñata There are 9 boxes that contain the messages: 1. AMPLIFY (like, comment, share) posts by #pwME with #MyalgicEncephalomyelitis #MillionsMissing #MEAwareness #WorldMEDay #MECFS #DisabilitySOS 2. SIGN the MEAction Network letter in support of the "ME/CFS Research Roadmap." 3. Learn more about #GreatestMEdicalScandal at www.johnvsjon.com 4. SEND the Mao Clinic Proceedings Concise Review #Diagnosis and Management of MyalgicEncephalomyelitis/Chronic Fatigue Syndrome" to your doctors and friends in healthcare. 5. SEND the new Bateman Horne Center "Clinical Care Guide to Managing ME/CFS, Long Covid, and IACCs" to your doctors and friends in healthcare. 6. Follow the MEAction Network, the World ME Alliance, The Sick Times and other advocacy and news orgs to stay informed on ME, Long Covid, and IACCs news & campaigns. 7. FOLLOW and if possible DONATE to orgs advancing research, for examp

ALT Bingo board titled #MEAwarenessMonth 2025 ACTION BINGO With an illustration of a diatom and a piñata There are 9 boxes that contain the messages: 1. AMPLIFY (like, comment, share) posts by #pwME with #MyalgicEncephalomyelitis #MillionsMissing #MEAwareness #WorldMEDay #MECFS #DisabilitySOS 2. SIGN the MEAction Network letter in support of the "ME/CFS Research Roadmap." 3. Learn more about #GreatestMEdicalScandal at www.johnvsjon.com 4. SEND the Mao Clinic Proceedings Concise Review #Diagnosis and Management of MyalgicEncephalomyelitis/Chronic Fatigue Syndrome" to your doctors and friends in healthcare. 5. SEND the new Bateman Horne Center "Clinical Care Guide to Managing ME/CFS, Long Covid, and IACCs" to your doctors and friends in healthcare. 6. Follow the MEAction Network, the World ME Alliance, The Sick Times and other advocacy and news orgs to stay informed on ME, Long Covid, and IACCs news & campaigns. 7. FOLLOW and if possible DONATE to orgs advancing research, for examp

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📣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
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Grateful to these two for using their precious spoons to continue advocating for the #LongCOVID community❤️💪
Long COVID Campaign
@LCCampaign5 May 2025
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.
Long COVID Campaign's Meighan Stone in her wheelchair, with Long COVID patient advocate and world-renowned cellist and composer Joshua Roman kneeling beside her, in front of the U.S. Capitol dome after meeting with key Congressional offices on patient community needs today.

ALT Long COVID Campaign's Meighan Stone in her wheelchair, with Long COVID patient advocate and world-renowned cellist and composer Joshua Roman kneeling beside her, in front of the U.S. Capitol dome after meeting with key Congressional offices on patient community needs today.

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Emily Rubenstein retweeted
Meighan Stone
@meighanstone5 May 2025
📣#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? help.senate.gov/hearings/hea…

Hearing on Fiscal Year 2026 Department of Health and Human Services Budget | The U.S. Senate...

Full Committee Hearing on May 14, 2025 at 9:30 AM

help.senate.gov
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Emily Rubenstein retweeted
Long COVID Campaign
@LCCampaign5 May 2025
📣#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
Meighan Stone
@meighanstone5 May 2025
📣#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? help.senate.gov/hearings/hea…

Hearing on Fiscal Year 2026 Department of Health and Human Services Budget | The U.S. Senate...

Full Committee Hearing on May 14, 2025 at 9:30 AM

help.senate.gov
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EDS Awareness Month Day 4: Flare day. Cancel plans I had been looking forward to for weeks day. Rest day. @TheEDSociety
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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.
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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
A baseball card-style image with a picture of Emily filling the majority of the image, a red box below reading Emily Rubenstein in white lettering, and a zebra head where the team logo would normally go. The background is wood grain. Emily is a white woman with long auburn hair wearing a blue sleeveless sweater.

ALT A baseball card-style image with a picture of Emily filling the majority of the image, a red box below reading Emily Rubenstein in white lettering, and a zebra head where the team logo would normally go. The background is wood grain. Emily is a white woman with long auburn hair wearing a blue sleeveless sweater.

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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: ehlers-danlos.com/resource/d… @TheEDSociety
A zoomed out photo of two side-by-side dry erase boards covered in blue, purple, green, and black writing with arrows between many different parts representing different symptoms, tests, treatments, and diagnoses.

ALT A zoomed out photo of two side-by-side dry erase boards covered in blue, purple, green, and black writing with arrows between many different parts representing different symptoms, tests, treatments, and diagnoses.

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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 is on an airplane wearing a neck brace and a bright yellow ReadiMask stick-on mask with a SIP valve installed on it. She's smiling beneath the mask and wearing a gray t-shirt.

ALT Emily is on an airplane wearing a neck brace and a bright yellow ReadiMask stick-on mask with a SIP valve installed on it. She's smiling beneath the mask and wearing a gray t-shirt.

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@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
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Thank you to all the healthcare workers who continue to keep us safe by masking😷❤️
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EDS/HSD Awareness Month Day 1: Starting things off by resharing a picture from yesterday, when I had the opportunity to represent @LCCampaign & join LC advocates at @SenatorCollins & @PattyMurray's bipartisan appropriations hearing on biomedical research. 1/x @TheEDSociety
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.

ALT 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.

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more replies
Bonding over similarities in symptoms and experiences is one path to common understanding across patient communities. However, having the same experiences isn't necessary to have compassion, support one another, or act in solidarity! 3/x
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I invite my broader patient advocacy community and beyond to follow along this month as I and many other zebras share more about EDS! If you have questions you'd like me to address during this awareness month, feel free to DM🦓 end/x
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