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Check out my latest article: A new chapter & lessons learned integrating my family and work. linkedin.com/pulse/new-chap… via @LinkedIn
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sj (she/her)
5.8K posts
sj (she/her)
@sacchetti
cbo, @hi_cleo, helping the working family, work. mama to luna & leo. recovering ALS caregiver helping team @synapticure. taking AIs for a better tomorrow.
san francisco Katılım Temmuz 2008
853 Takip Edilen1.4K Takipçiler
sj (she/her) retweetledi
ALS Community Files Citizens’ Petition asking FDA to Approve NurOwn Stem Cell Therapy accessnewswire.com/newsroom/en/he…
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sj (she/her) retweetledi
@GavinNewsom @charliekirk11 You’re endorsing attacks on trans youth while in conversation with someone who dehumanizes trans people as a career.
You’re attacking trans kids to bolster your national profile for a 2028 run.
I deeply regret ever supporting you, and I genuinely hope your cowardice haunts you.
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sj (she/her) retweetledi
sj (she/her) retweetledi
Because I am getting this question dozens of times in my DMs from trans people/parents... If you're trying to move for safety:
Countries: Australia, Canada, New Zealand, Spain, France.
States: Any blue state on my risk assessment map, which I'll update post-election.
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sj (she/her) retweetledi
Will Ferrell deciding to educate himself and others as well as supporting and loving Harper unconditionally when she came out to him really puts some other comedians to shame, huh.
netflix⁷@netflix
Will Ferrell and his close friend, former head writer at SNL, Harper Steele embark on a cross-country road trip together after Harper comes out as a trans woman in the documentary film, WILL & HARPER. In select theaters this September and on Netflix September 27.
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@chrissyfarr Id imagine it varies dramatically by specialty. Oncology, Derm, Neuro I bet all would know quite well given the impact of drug prices and major dependence on/desperation from patients for new treatments.
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A survey I'd be fascinated to see if someone did it:
What percentage of practicing clinicians could explain what a PBM is in detail if asked (without being able to look it up).
Thoughts on what the % would be?
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@tonyadam SO many amazing stories. I think 1password is one of the most recent unbelievable success stories.
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Looking for examples of SaaS businesses that were grown bootstrapped or self-funded and have over $1MM ARR. Anyone with examples?
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A year after I retired as an ALS caregiver, its impact on me is still felt every day. Not only does @sabrevaya bring visibility to the invisible caregivers among us, she's built a bridge to a better support system & gives me hope of transformation to come. Sandra = the best. 💙
Sandra Abrevaya@sabrevaya
On the last day of National Family Caregivers Month, I want to share that being a caregiver has been the single hardest experience of my life. It is incredibly painful, overwhelming and I often feel like with Brian's illness I have lost my own identity, my freedom, my own life.
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@RBatniji Oh Rajaie, my heart breaks for this unimaginable and horrific reality. Sending the love I have but wish I could send peace.
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sj (she/her) retweetledi
Congrats Brian & Sandra for sacrificing so much to help so many. The #ALS community is forever changed because of all you have accomplished.
Mad respect & gratitude!
@bsw5020 @sabrevaya
The American Lawyer@AmericanLawyer
This year, we not only have an Attorney of the Year, but a Highly Commended finalist. For his dedication tenacity and commitment to fighting for those with ALS, congratulations to Brian Wallach. #TALawards
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sj (she/her) retweetledi
Everyone I've referred to @Synapticure has loved the ability to see their #neurologists from the comfort of home.
If you know any families with #huntingtons, please share this blog as @DrJaimeMartin has a long connection with the HD community & her patients adore her!
synapticure.com/blog/caring-fo…
#EndHD #neurotwitter #telehealth #telemedicine
#CarefromAnywhere #HuntingtonsDisease
Synapticure@synapticure
Synapticure & our #MovementDisorder specialist, @DrJaimeMartin, are excited to announce that our #neurology clinic now sees patients in the #Huntingtons Disase community. Specialized patient-centric care from anywhere in the US! #EndHD #neurotwitter vist.ly/e55b
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sj (she/her) retweetledi
The first episode of Spotlight On is live. Tune in to hear @YouveGotFox, @StevoLoughlin, and @SaraIttelson discuss Dylan’s journey as a solo founder, @AssemblyAI’s early challenges and triumphs, and how to cut through the noise as an #AI-native company:
accel.com/spotlighton/as…
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sj (she/her) retweetledi
With this story is a tender, must-watch video clip of ALS advocates Brian Wallach @bsw502 Sandra Abrevaya @sabrevaya who have led arguably "the most successful patient advocacy campaign this century.''
statnews.com/2023/09/08/als… via @statnews @damiangarde @levfacher #STATFuture
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@bsw5020 😂 and Moon looks pretty darn good too! (cant wait to see you both manana)
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I am definitely biased, but I still think I look pretty handsome for a guy who has lived with ALS for six years.
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NIMBYs halt progress. When one works on seemingly intractable problems, like housing, reality hits - systemic solutions mean change for people who *don't want change*. I encountered this w/ Dementia facility planning, and in one town hall meeting I realized why change is SO slow.
Jordan Grimes (on Bluesky @cafedujord)@cafedujord
Good evening, Twitter! I’m spending my Friday night in the affluent Bay Area suburb of Millbrae, where the county is presenting a plan to turn a hotel into ~100 homes for unhoused residents. It appears that the entire city is here, and they are *pissed*. 🧵
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@timjschwartz So brutal. One thing to know the broad strokes but the personal stories are so sad/scary. Hope you feel safer asap
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sj (she/her) retweetledi
USN pilot & #Veteran dying of #ALS needs help!
#Veterans deserve #MedicalArsenal of #NurOwn
@BellinaMatthew & @BellinaDeb have been meeting w FDA & told them #NurOwnWorks in 2019.
W/o FDA approval Matt can't get more!
⬇️Public Comment of Matt's mom Deb
regulations.gov/comment/FDA-20…
AZ Latina ☮️🌊🟦@aVoice4ALS
. #Navy Pilot Matt Bellina on #NurOwn 2014 - #ALS dx 2018 - Using Wheelchair & Trilogy 2019 - #NurOwnWorks. Stands out of wheelchair. No Trilogy Oct 2022 - Still standing & breathing Matt deserves chance to share evidence of how he "feels & functions" w #FDA ⬇️See 2019 Video
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