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
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Check out my latest article: A new chapter & lessons learned integrating my family and work. linkedin.com/pulse/new-chapt… via @LinkedIn
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ALS Community Files Citizens’ Petition asking FDA to Approve NurOwn Stem Cell Therapy accessnewswire.com/newsroom/…
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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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I think @AOC’s argument about transgender bathroom bans is…pretty much perfect
Kevin Frey
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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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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.
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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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. 💙
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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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
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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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-…
#EndHD #neurotwitter #telehealth #telemedicine
#CarefromAnywhere #HuntingtonsDisease
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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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/assemb…
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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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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.
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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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-…
ALT https://www.regulations.gov/comment/FDA-2023-N-2608-0012
. #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
ALT NurOwn improved how Matt feels & functions. He has objective evidence to corroborate his testimony. He deserves an opportunity to share this evidence with the FDA before it makes a decision about whether NurOwn should be approved. Matt received 7 doses of NurOwn. His first dose was shortly after Christmas in 2018. He received 5 more doses in 2019. After a gap of time, he received his final 7th dose in 2020. As a Navy pilot, Matt had a 10x risk of getting ALS. He sacrificed his life to fight for our country and our rights of due process. He deserves a right to share his story with the FDA. Matt co-authored a Press Release with more information about how ALS impacts Veterans. prn.to/3Vm70aO
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Clenbuterol stabilized David's breathing for 2 yrs then @US_FDA blocked import. He died July 25
@DrCaliff_FDA @FDACDER
#RWD & clinical data show it likely works in #ALS
scholars.duke.edu/publicatio…
Ask Dr. Bedlack of @Duke_Neurology
@NEALSConsortium
No risk is worse than ALS!
ALT https://journals.lww.com/jcnmd/Fulltext/2023/06000/Clenbuterol_Treatment_Is_Safe_and_Associated_With.5.aspx https://www.dignitymemorial.com/obituaries/cary-nc/david-lloyd-11387909
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Relying solely on “the data” to determine efficacy in #ALS clinical trials today is kind of like me trying to watch tv without my glasses or contacts. Yes, I can make out certain things, but I cannot see the details. At best, it’s fuzzy science that requires flexibility.
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We are #hiring a #scientist to join our Philadelphia team at Synapticure Inc.
If you are passionate about tackling disease modelling challenges in #neurodegeneration please apply!
#als #endals #neurons #organoids #endftd #IPSC
jobs.lever.co/synapticure/1c…
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A woman whose husband has ALS walks into a hospital waiting room, ends up chatting with a woman with lung cancer getting a port for chemo and a gentleman with multiple myeloma. They all talk for an hour.
The punch line? All we can do in this world is show up for one another ❤️
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In Dec 2020, I traveled 1000 miles to enroll in the Healey Platform Trial. I was seen at the ALS clinic there. Travel is hard. This is a wonderful option for care.
🚫 Planes, Trains & Automobiles
Living with #ALS, Brian knows first-hand that traveling to clinics becomes increasingly difficult
Synapticure is here to ease that burden
Meet with our #neurologists from the comfort of home
➡️ vist.ly/594s
#telehealth #telemedicine
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We started Synapticure with one hope: to reimagine #ALS care..
Turning that hope into reality hasn't been simple--but, we think we're on the right track when feedback sounds like this.
Synapticure is built for patients, by patients.
⬇️Give us a try today
vist.ly/57pn
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"It's so simple
we don't want anything in life except to live"
~ Synapticure's CEO @SAbrevaya
Thx to @jmsummers of @NPR's All Things Considered for Part 1 of this compelling story re the fight against #neurodegenerative diseases like #ALS
#Parkinsons
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The ALS journey changes everything in every way when it touches your family - as a recovering ALS caregiver I still have few words. Hence why I’m grateful for this piece and ofc @bsw5020 and @sabrevaya for bringing much needed attn to this devastating disease.
"This is hell, but I still love you." - @sabrevaya
Thank you to @NPR's All Things Considered team for this powerful and raw piece about what ALS takes away from you, what it's like to care for someone with ALS, and how you can sustain love.
npr.org/2023/06/27/118465585…
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