https://bsky.app/profile/erubie.bsky.socialhttps://bsky.app/profile/erubie.bsky.social/post/3lrp24ec2vs2dWant 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://dredf.org/action-alert-doe-civil-rights-and-section-504 https://dredf.org/action-alert-doe-civil-rights-and-section-504/?fbclid=IwY2xjawK8boBleHRuA2FlbQIxMQABHo8YQlPNCn_4BHScAGAkTJHJNZ_4aGw-JHf-Sg_PGOySpxwSlwd2RIvEKLtB_aem_Q-gtHzzPmiiE9m0SEAgxVA16 Jun 2025 03:30 +0000at://did:plc:k5dcijsxy27xvtbb7tnx7o7d/app.bsky.feed.post/3lrp24ec2vs2dhttps://bsky.app/profile/erubie.bsky.social/post/3lpd72kpsmc24Grateful 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 https://cassidy.senate.gov/contact/get-in-touch16 May 2025 23:36 +0000at://did:plc:k5dcijsxy27xvtbb7tnx7o7d/app.bsky.feed.post/3lpd72kpsmc24https://bsky.app/profile/erubie.bsky.social/post/3lofd22uwn22oEDS Awareness Month Day 4: Flare day. Cancel plans I had been looking forward to for weeks day. Rest day. @ehlersdanlos.bsky.social05 May 2025 02:28 +0000at://did:plc:k5dcijsxy27xvtbb7tnx7o7d/app.bsky.feed.post/3lofd22uwn22ohttps://bsky.app/profile/erubie.bsky.social/post/3locxkzlqkc2aEDS 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.04 May 2025 03:57 +0000at://did:plc:k5dcijsxy27xvtbb7tnx7o7d/app.bsky.feed.post/3locxkzlqkc2ahttps://bsky.app/profile/erubie.bsky.social/post/3lo7beb7ep22rEDS 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❤️💪02 May 2025 16:42 +0000at://did:plc:k5dcijsxy27xvtbb7tnx7o7d/app.bsky.feed.post/3lo7beb7ep22rhttps://bsky.app/profile/erubie.bsky.social/post/3lo3mozyau22aEDS/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/x01 May 2025 05:54 +0000at://did:plc:k5dcijsxy27xvtbb7tnx7o7d/app.bsky.feed.post/3lo3mozyau22ahttps://bsky.app/profile/erubie.bsky.social/post/3lo2vggmuws2fMeaningful 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.social30 Apr 2025 22:57 +0000at://did:plc:k5dcijsxy27xvtbb7tnx7o7d/app.bsky.feed.post/3lo2vggmuws2fhttps://bsky.app/profile/erubie.bsky.social/post/3lnxxz3tih227For 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👕 https://www.appropriations.senate.gov/hearings/biomedical-research-keeping-americas-edge-in-innovation [contains quote post or other embedded content]29 Apr 2025 19:06 +0000at://did:plc:k5dcijsxy27xvtbb7tnx7o7d/app.bsky.feed.post/3lnxxz3tih227https://bsky.app/profile/erubie.bsky.social/post/3lnw4anfcfc25Call tonight and leave a message. Call again tomorrow. Make it clear that we don't want anti-mask policies in the state budget! [contains quote post or other embedded content]29 Apr 2025 01:16 +0000at://did:plc:k5dcijsxy27xvtbb7tnx7o7d/app.bsky.feed.post/3lnw4anfcfc25https://bsky.app/profile/erubie.bsky.social/post/3lnlbvsqwgs2zJust made my calls to Senator Brouk and Assembly Member Lunsford. New Yorkers, please make sure to call TODAY & encourage your state reps to oppose the updated mask restriction language! [contains quote post or other embedded content]24 Apr 2025 17:58 +0000at://did:plc:k5dcijsxy27xvtbb7tnx7o7d/app.bsky.feed.post/3lnlbvsqwgs2zhttps://bsky.app/profile/erubie.bsky.social/post/3lng2xv5zxk2wHad a blast guest facilitating @thewashingtonpost.bsky.social Disability Coalition's first quarterly book club! Yesterday's discussion was about @sfdirewolf.bsky.social's Disability Visibility—the perfect book to kick things off with.22 Apr 2025 16:11 +0000at://did:plc:k5dcijsxy27xvtbb7tnx7o7d/app.bsky.feed.post/3lng2xv5zxk2w