Reminder: comments due TODAY. More info and templates here: dredf.org/action-alert... This is a tangible way to fight this administration’s attacks on the disability community.
You can follow @dredf.bsky.social'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!💪🇺🇲
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.
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...
Coverage of Senator Cassidy's question to HHS Secretary Kennedy to kick off the hearing covered by @thesicktimes.bsky.social: thesicktimes.org/2025/05/14/s...
Grateful to Sen Bill Cassidy for keeping the pressure on during Wed's HELP hearing on FY26 HHS budget!
Those in Louisiana: please take a min to thank him for his work to make Long COVID the very first topic of the hearing!
Call: 202-224-5824
Message: cassidy.senate.gov/contact/get-in-touch
TX anti-mask bill SB 2595 got pushed thru to a committee overnight bc the session is close to ending & they bend the rules. 🚨 Leave a public comment‼️ comments.house.texas.gov/home
TX Mask Bills Toolkit:
sordid-accordion-7ef.notion.site/TX-H-B-No-30...
@ancirabecky.bsky.social
Ben HsuBorger (white man with short dark hair & beard wearing an N95 mask and glasses and dark shirt) sits on a train with window behind him.
Sending our best to Ben HsuBorger, Terri Wilder #MEAction MN state lead, & other #MECFS #LongCovid advocates heading to Minnesota state capitol tomorrow.
House budget is proposing eliminating ALL appropriations for Long COVID grants & health dept staffing!
SOS moment for #MillionsMissing in MN.
Collage graphic showing a group of ME advocates at an awareness demonstration, the Minnesota state capitol building, a portrait of house speaker Lisa Demuth, and a vial of blood, overlaid with boxes in pastel blue, green, purple, and pink. The text reads, “Minnesota House budget proposes eliminating state Long COVID program. Cuts could end Long COVID research, communications, and grants in Minnesota, which has been a leader in state-level public health responses to the crisis. By Betsy Ladyzhets. The Sick Times.”
“If you cut this funding, you won’t make the problem disappear. You’ll see us more — in ERs, in homeless shelters, and on suicide prevention lines. You’ll lose the expertise of those who know what works — and what doesn’t.” - Ben HsuBorger, #MEAction advocacy director in testimony to the state legislature
Minnesota House legislators have proposed budget cuts that could end Long COVID research, communications, and grants in Minnesota, which has been a leader in state-level public health responses to the crisis. bit.ly/43lOjKM
EDS Awareness Month Day 4: Flare day. Cancel plans I had been looking forward to for weeks day. Rest day.
@ehlersdanlos.bsky.social
Reminder: There's still time to get the anti-mask policy out of the New York state budget. Call your state senator first thing Monday. bit.ly/no-mask-ban
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.
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: www.ehlers-danlos.com/resource/dia...
@ehlersdanlos.bsky.social
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.
Age at Dx: 29
Age I remember someone first telling me 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
EDS Awareness Month Day 3: In 2023, @ehlersdanlos.bsky.social invited me to share my diagnostic journey with reps from @fda.gov. Part of that talk included my own baseball-style diagnosis stats.
Thank you to all the healthcare workers who continue to keep us safe by masking😷❤️
ReadiMasks 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, Alliant Biotech gave me a reusable sharable link: EMILY251Z4VFO
@ehlersdanlos.bsky.social
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.
EDS Awareness Month Day 2: Boarded my flight home from DC (more about my trip to come). My ReadiMask caught the eye of a woman wearing a surgical. She asked me about it & shared that she works in a hospital & many provided masks don't fit her. I gave her a ReadiMask & thanked her for still masking❤️💪
Don’t underestimate the impact of choosing to wear a mask (ideally an N95)
You’re telling disabled & marginalized people they’re not expendable.
You’re telling government you don’t believe that COVID is over.
You’re fighting for social justice & against ableism.
You’re protecting your health.
🥹🥰💪
Grateful to be part of @lccampaign.bsky.social and the incredible broader LC community—those who were able to make it to the hearing and those who advocate in other ways, including focusing on their health.
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
@ehlersdanlos.bsky.social
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
While @daniellewis.bsky.social is the half of our couple with Long COVID, there is significant overlap in comorbidities between Long COVID and Ehlers Danlos Syndrome (EDS), including MCAS, POTS, and more—as well as research showing that hypermobility may be a risk factor for Long COVID. 2/x
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.
EDS/HSD Awareness Month Day 1: Starting things off by resharing a picture from yesterday, when I had the opportunity to represent @lccampaign.bsky.social & join LC advocates in attending Senator Collins & @murray.senate.gov's bipartisan appropriations hearing on biomedical research. 1/x
Was able to thank @pattymurray.bsky.social in person after the hearing. Equally grateful to Senator Collins for this bipartisan space to highlight the importance of biomedical research and of ensuring sufficient funding for it!
@lccampaign.bsky.social
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.
Meaningful morning with fellow #LongCovid advocates at Sen Collins & @pattymurray.bsky.social's bipartisan biomedical research hearing. Heartening to hear Senate Approps GOP & @senateapprops.bsky.social's questions & bipartisan support for biomedical research.
@lccampaign.bsky.social
![⚠️URGENT CALL TO ACTION 4/29⚠️
STOP ANTI-MASK NY LAW
We need MASSIVE opposition to the proposed budget language while we can still fight it:
CALL your state senator first. See bit.ly/no-mask-ban for full list of contacts.
ASK 3 friends to call to amplify our impact.
“Hi my name is [Name], and I’m calling as a constituent to urge [official] to oppose any policy that penalizes masking in the budget or beyond, including Hochul’s latest update. This law will be largely used against BIPOC, undocumented, and disabled New Yorkers. In a moment of rising authoritarianism, Dems must not allow policies that attack our civil liberties.”
Tell us what they say: bit.ly/mask-ban-debrief](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:syerynfwykwowkb4tfkzsgnt/bafkreiblznoqas7jwpwyuvbvkx3tmmev5bw3dfery3r7cbfxcft5wd4ngu@jpeg)
⚠️URGENT CALL TO ACTION 4/29⚠️ STOP ANTI-MASK NY LAW We need MASSIVE opposition to the proposed budget language while we can still fight it: CALL your state senator first. See bit.ly/no-mask-ban for full list of contacts. ASK 3 friends to call to amplify our impact. “Hi my name is [Name], and I’m calling as a constituent to urge [official] to oppose any policy that penalizes masking in the budget or beyond, including Hochul’s latest update. This law will be largely used against BIPOC, undocumented, and disabled New Yorkers. In a moment of rising authoritarianism, Dems must not allow policies that attack our civil liberties.” Tell us what they say: bit.ly/mask-ban-debrief
⚠️ URGENT ACTION 4/29:
The budget is NOT final. We need MASSIVE opposition while there's still time.
➡️ Call your reps to get anti-mask language OUT before a vote.
➡️ Ask 3 friends to call too!
Full toolkit + contacts: bit.ly/no-mask-ban
Use the new script below ⬇️
For anyone in the DC area, join @lccampaign.bsky.social tomorrow (Apr 30) at Senator Collins & @murray.senate.gov's bipartisan medical research hearing at 10:30 am! Let us know if you plan to join—we have LC teal tshirts👕
www.appropriations.senate.gov/hearings/bio...
A screenshot of Emily's call history showing calls to three numbers with NYS area codes and an additional number listed as "New York State Assembly!"
Left messages tonight!
A screenshot of Emily's call history showing calls to three numbers with NYS area codes and an additional number listed as "New York State Assembly."
Left my messages. Have you?
@covidadvocacyny.bsky.social @jews4maskrights.bsky.social
Find your NY State Senator: www.nysenate.gov/find-my-sena...
Find your NY State Assemblymember: nyassembly.gov/mem/search/
Assembly Speaker Carl Heastie: 518-455-3791
Senate Majority Leader Andrea Stewart-Cousins: 518-455-2585
Governor Hochul: 518-474-8390
@covidadvocacyny.bsky.social
