Emily Rubenstein
@emrubenstein
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EDS🦓 endo💛 Long COVID ally🩵
Washington, DC
Joined February 2017
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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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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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
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RT @LCCampaign: #LongCOVID researchers: TOMORROW Weds May 28 12-1pm ET CDMRP webinar on funding opportunities via Peer Reviewed Medical Res….
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Coverage of @SenBillCassidy's question to @HHSGov @SecKennedy to kick off the hearing covered by @thesicktimes:
thesicktimes.org
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...
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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
"*" indicates required fields Your Name Prefix*– Select –Mr.Mrs.Ms.Mr. and Mrs.Dr.First Name* Middle Last Name* Suffix Your Contact Information Untitled Check Here If You Have a Foreign Address...
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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RT @LCCampaign: THANK YOU to every #LongCOVID patient, caregiver & loved one, from red & blue states, for calling, emailing & meeting with….
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RT @_diatoma: For folks asking "What can I do to help #pwME?", here's an Action Bingo for #MEAwarenessMonth ❤️. Comment below when you'….
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RT @LCCampaign: 📣Long COVID Patient Community Win News📣 Due to YOUR patient advocacy, #LongCOVID researchers can now apply FOR THE FIRST TI….
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Grateful to these two for using their precious spoons to continue advocating for the #LongCOVID community❤️💪.
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.
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RT @meighanstone: 📣#LongCOVID Community📣 Looks like Senate HELP Committee @GOPHELP @HELPCmteDems will now have @SecKennedy testify at FY26….
help.senate.gov
Full Committee Hearing on May 14, 2025 at 9:30 AM
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RT @LCCampaign: 📣#LongCOVID Community📣 We haven't seen this anywhere else yet: May 14 Senate HELP Committee hearing now scheduled with @Sec….
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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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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: @TheEDSociety
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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
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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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Thank you to all the healthcare workers who continue to keep us safe by masking😷❤️.
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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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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❤️💪
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