@PANDASPPN And on and on it goes 🎡 .@AmerAcadPeds you can do better 🙏 .You need to do better 🙏 .These children’s lives are on the line and time is running out ⌛️.

💲 . ⏳Insurers are denying treatment coverage .⏳Pediatricians & other clinicians now REFUSE to follow the established @pandasppn treatment guidelines….⏳State agencies are refusing to share or disseminate information on PANS because there is too much conflicting information.

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And so here we find ourselves in a place to decide whether we remain a sitting duck 🦆 or demand better for our PANDAS/PANS community 🤷🏽🤷‍♂️🤷🏾‍♀️. And in the meantime, the cost of this harmful guidance is growing 💲.

The @AmerAcadPeds ‘guidance’ on PANS is creating more harm to our community than good. WE KNEW THIS WAS COMING as it took them 30 yrs TO RECOGNIZE PANDAS/PANS & then failed to INCLUDE established medical experts in the field or the 20 + years of published research @pandasppn

The Chair of the Department of Neurology at @Georgetown RECOGNIZES PANDAS/PANS and has a Brain Bank now established there. Isn’t it time the NW medical community caught up? @seattlechildren @OHSUDoernbecher @RandallChildren @StLukesHealth @providence .

RT @DAgalliu: @NNwppn Thank you @NNwppn for supporting Ugur Akcan @occludens to continue his work on this terrible disease affecting childr….

VITAL PANDAS/PANS research is being threatened because of federal funding cuts at Columbia. Our children deserve better. Please donate what you can today! @DAgalliu .

@seattletimes @politico @investigatewest @UWPsychiatry @UWNeurology @UWPedsRes @uwpediatrics @uwpedsneuro @UWPeds_AK @uwsocialwork.

You don’t get to choose to believe in PANDAS/PANS. It’s not the tooth fairy. These are established disorders that require RECOGNITION and MEDICAL TREATMENT. Accountability is coming for those who continue to fail these patients. We won’t stand by anymore. @seattlechildren

Negligence. Blatant ignorance. Medical malpractice?.Stanford, Harvard, Dartmouth, UCLA, University of Arizona, University of Arkansas and others have CENTERS OF EXCELLENCE FOR THIS POPULATION. The Northwest LAGS FAR BEHIND. @seattlechildren @jeffsperring @investigatewest

@jakefey @tinaorwall @Sen_ACleveland @jessdbateman @TravisSCouture @SlatterVandana @lizzgior @journojacquelyn @GoldsteinStreet @CascadePBSNews @stmentalhealth @WAHouseDems @WaHouseGOP @WASenDemocrats @WaSenateGOP @thecolumbian @KING5Seattle @komonews @investigatewest.

Virginia was able to UNANIMOUSLY PASS THEIR PANDAS/PANS bill through the House & Senate. They will become the 14th state to do so. California and Oregon have as well. Who will get this done for Washington? @RepLeavitt @laurendavisWA @marcusriccelli @AlexRamel @TarraSimmons5

@WAHouseDems @WaHouseGOP @DebraWA40 @aliciarulefor42 @RepLeavitt @MichelleCaldier @lauriejinkins @laurendavisWA @AndrewEngell @SamLow39 @votenicolemacri @LisaParshley @jakefey @TarraSimmons5 @StonierforRep @runsinthehalls @SteveTharinger @marcusriccelli @stmentalhealth @KUOW.

WA HB 1741 is dead in committee ☠️. No public hearing despite our community heavily advocating for our voices to be heard 😡. Once again Washington has failed to serve those suffering from these disorders. Needless suffering that could be alleviated with proper access to care ☝️

Shout out to the legislators of this group who are co-sponsors on Washington's HB 1741 for IVIG access for children with PANDAS/PANS. Thank you for standing up for Washington children & feel free to nudge Rep Bronoske for that last minute hearing @TarraSimmons5 @RepGregNance

Washington firefighters families are impacted by PANDAS/PANS too! .Let's put out the fire by ensuring children with PANDAS/PANS can get treatment. Support HB 1741. @Local2903 @LaceyFireDist3 @wscff9thdist @PullmanFF @IAFF2088 @IAFFLocal2444 @IAFF27 @IAFFLocal46 @IAFFLocal31

Why have 13 other states passed this legislation for children in their states but WA is leaving these children behind? @WAHouseDems @WaHouseGOP @WASenDemocrats @WaSenateGOP @WAStateStandard @LaurelDemkovich @GoldsteinStreet @CascadePBSNews @KUOW @AmyRadil @KimOnKUOW @KUOWdebwang.

Thank YOU @HaroldPerrineau for standing up for WA children and House Bill 1741! Rep Bronoske-please schedule a hearing! These children need your help! @KIRO7Seattle @KIRO7Julie @komonews @MollyShenKOMO @KING5Seattle @K5Investigators @fox13seattle @KUOW @KUOWdebwang @AmyRadil.

All children with PANDAS/PANS should have access to the medical care they require. Instead insurers deny causing undue suffering and the loss of childhoods these kids will never get back @HaroldPerrineau @markcuban @PGAFamilyFdn @Seahawks @seattletimes @SeattleMFr.

Virginia just passed their PANDAS/PANS coverage bill unanimously out of the House. What are we WAITING for Washington?.Washington children DESERVE the same. Don't leave them behind. @WAHouseDems @WaHouseGOP @marcusriccelli @Matt4_Liberty @MichelleCaldier @joefitzgibbon