Another major life milestone, another horrible emergency: www.instagram.com/p/DTHyaLklD9... Can you help by donating any dirivitive of 55 ($0.55, $5.50, $55, $550,...) for my birthday?: Tiny.cc/RareDiseaseHope
RareDiseasePatient
@rarediseasepatient.bsky.social
#RareDisease patient, missing life: Polymath, classical musician, linguist, UNI instructor, minister, metaphysicist, intuitive, naturalist, #vegan ARA
⚠️EMERGENCY⚠️ I'm out of the (abusive) nursing home, with no monthly funds for an assisted-living facility. I may be homeless as of 9 Jan. Can you help, please? www.instagram.com/p/DTHW1m8lM0... To help with uncovered meds, please see the OTCS, esp. Quercetin, in my Amazon Wish List: Tiny.cc/7tujuz
#DisabilityDiscrimination by META: How I responded: www.instagram.com/p/DTG9i0kARl... I was offline during a critical emergency. Can you help, please?: Tiny.cc/RareDiseaseHope
I'm suffering, with rare, fatal diseases, in a #NursingHome. My life depends on #Medicaid, #SocialSecurity, et. al. I spent excruciating energy, incl w @meactnet.bsky.social💙, begging #Senators to oppose the budget. My life didn't matter to these, 10 Dem Senators either. @everylifeorg.bsky.social
Matt Novak@paleofuture.bsky.social · 2y agoThe final tally to advance the CR is 62-38. The Democrats who voted for cloture, giving Donald Trump everything he wants: Cortez Masto (NV) Durbin (IL) Fetterman (PA) Gillibrand (NY) Hassan (NH) Peters (MI) Schatz (HI) Schumer (NY) Shaheen (NH)
⚠️SAVE MEDICAID & HHS: SAVE MY LIFE.⚠️ I'm bedridden, with comorbid, rare, fatal diseases, in a #NursingHome, paid by #Medicaid (as is true of 2/3 of all US nursing-home patients). If Medicaid is cut, I will be homeless & die. Contact info. for key Senators is in my posted letter. #SaveMedicaid
The Tennessee Holler @thetnholler.bsky.social · 2y ago🔥 @aoc.bsky.social : “The numbers don’t add up. $880 BILLION is a devastating cut to Medicaid, and an attack on Medicare. Anyone who votes for this budget is voting to cut Medicaid and gut health care for Medicare recipients in 🇺🇸.” Full: www.instagram.com/reel/DGg7cr0...
As International #WomensDay approaches, a reminder for the US: It wasn't #witches who were burned, drowned, & tortured; it was #women. & we are repeating history. There are times in history to gather #magic for common cause. #witch #witchsky #WitchesofBluesky #Salem #SalemWitchTrials #RoeVWade
Alicia | Witch | Writer@aislacameronwrites.bsky.social · 2y agoGood evening Witches! #witchsky #witchcraft #texaswitch #salemwitchtrials
After the #NIH- #FDA #RareDiseaseDay event ☠️, & slashing of #HHS depts, I ask the #RareDiseaseCaucus to address the #RareDisease community. Letters asking Sen Wicker & Rep Bilirakis to resign their Caucus chairs are in my feed. @amyklobuchar.com @dorismatsui.bsky.social @everylifeorg.bsky.social
Carolyn Bertozzi@carolynbertozzi.bskyverified.social · 2y agoVery sad to see that #RareDiseaseDay event at FDA-NIH has been cancelled. Cuts that limit rare disease research and cures (1) leave patients behind, and (2) forfeit precious opportunity to learn more about common human diseases. udnf.org/udnf-stateme...
28 FEB, 2025 #RareDiseaseDay & Economic Blackout Day Please donate the boycott $$$ you save to the medical-support fundraisers of rare-disease patients. About: instagram.com/p/DGkuU5IxuvA/?igsh=MzRlODBiNWFlZA==
28 FEB is #RareDiseaseDay. There are 30,000,000 rare-disease patients in the US. NIH & FDA cuts stopped our clinical trials & treatments. Now, Medicaid cuts will kill us. When boycotting on 2/28, please give the $ you save to the fundraisers of rare-disease patients. www.yahoo.com/news/no-amaz...
'No Amazon, no Walmart, no fast food': What's behind the 'Feb. 28 economic blackout'
The People's Union USA, a self-described “grassroots movement” founded by John Schwarz, is encouraging Americans to refrain from making non-essential purchases on Friday.
yahoo.com
URGENT: SAVE MEDICAID TO SAVE MY LIFE: I live in a skilled nursing home, with comorbid, rare, fatal diseases, on Medicaid. If the House Rep budget passes, cutting #Medicaid, I will be homeless & dead. Please call NOW, & ask Republican Reps to read my letter & SAVE MY LIFE.
⚠️URGENT: MEDICAID,⚠️ DISABILITY, & NURSING HOMES: I am severely disabled, with rare, fatal diseases, in a skilled nursing home. ⚠️If Medicaid is cut, I will be immediately HOMELESS & DEAD.⚠️ PLEASE SAVE MEDICAID, & SAVE MY LIFE: Call & write to House Representatives before votes on 2/24-2/25.
DrDinD.bsky.social@drdind.bsky.social · 2y agoRepublicans want to kill your grandparents. They want to cut Medicaid by nearly a trillion bucks so billionaires keep more money in their accounts. Medicaid pays for nursing home care.
⚠️URGENT: MEDICAID,⚠️ DISABILITY, & NURSING HOMES: I am severely disabled, with rare, fatal diseases, in a skilled nursing home. ⚠️If Medicaid is cut, I will be immediately HOMELESS & DEAD.⚠️ PLEASE SAVE MEDICAID, & SAVE MY LIFE: Call & write to your House Representative before votes on 2/24-2/25.
ACLU@aclu.org · 2y agoThe House could vote next week on drastic cuts to Medicaid that would gut critical programs that protect the civil rights and dignity of millions of Americans — including people with disabilities. Contact your member of Congress: No cuts to Medicaid.
#RareDiseaseDay 28 FEB, 2025, ...after confirmation of #RFK to #HHS,... 🧵1/3 @nordrare.bsky.social @everylifeorg.bsky.social @amyklobuchar.com @adamschiff.com @alexpadilla4ca.bsky.social @joyannreid.bsky.social @aoc.bsky.social @alexwags.bsky.social @maddow.msnbc.com @lawrenceodonnell.msnbc.com
Just a point of order: @maddow.msnbc.com tonight: "In all likelihood, you don't have a family crest." My mother's family name was #Davies. 😕🤦🏼♀️ #FamilyCrest On a more serious note: I'll try to post my letter to Senators to vote NO on #RFK tonight. I'm #disabled, in a #NursingHome, on #Medicaid.
Please don't forget the #disabled as a historic target & casualty.
Eugene Chevy™@eugenechevy.bsky.social · 2y agoFirst, they came for the immigrants, and I did not speak out— Because I was not an immigrant. Then they came for the homeless, and I did not speak out— Because I was not homeless. Then they came for the... Are we really going to sit back and just watch this?
Can you please #help me pay for #surgery, #medical care, & to return #home?: 💔GoFundMe.com/HOPE-for-a-RareDisease-Patient #NursingHome #RareDisease #Fundraiser #Donate #Share #DonateorShare #HelpingOthers #Neurosurgery #OrthopedicSurgery #EhlersDanlosSyndrome #MadelungsDeformity #AddisonsDisease
My contention since the 110th Congress: All persons with a penis living or traveling in the US must be required to have a vasectomy. Temporary reversal may be applied for and adjudicated by panels of qualified persons with a uterus. Until then, I believe that Lysistrata had it right all along.
Sassy0210@sassy0210.bsky.social · 2y ago
I love that so many are advocating for libraries on my TL. If you don't know already, you can connect your library card to Libby, which allows you to read books on the Kindle store for FREE. #Booksky
I’m guessing I’m in some sort of starter pack about COVID, Long COVID and or masking & mitigations. I have gained over a 1k followers and and somewhat overwhelmed. Thank you to whoever included me. I’ll try to live up to your recommendation. Masks Keep Us Safe. xo
