"It's so simple we don't want anything in life except to live" ~ Synapticure's CEO @SAbrevaya Thx to Juana Summers of NPR's All Things Considered for Part 1 of this compelling story re the fight against #neurodegenerative diseases like #ALS #Parkinsons vist.ly/55xg

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

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.

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 ❤️

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…

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.

USN pilot & #Veteran dying of #ALS needs help! #Veterans deserve #MedicalArsenal of #NurOwn Matthew Bellina & Deb Bellina 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…

Clenbuterol stabilized David's breathing for 2 yrs then U.S. FDA blocked import. He died July 25 Dr. Robert M. Califf @FDACDER #RWD & clinical data show it likely works in #ALS scholars.duke.edu/publication/15… Ask Dr. Bedlack of Duke Neurology NEALS Consortium No risk is worse than ALS!

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.

With this story is a tender, must-watch video clip of ALS advocates Brian Wallach @bsw502 Sandra Abrevaya Sandra Abrevaya who have led arguably "the most successful patient advocacy campaign this century.'' statnews.com/2023/09/08/als… via STAT Damian Garde @levfacher #STATFuture

The first episode of Spotlight On is live. Tune in to hear Dylan Fox, Steve Loughlin, and Sara Ittelson 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…

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 Jaime Martin MD PhD has a long connection with the HD community & her patients adore her!

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! Brian Wallach Sandra Abrevaya

A year after I retired as an ALS caregiver, its impact on me is still felt every day. Not only does Sandra Abrevaya 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. 💙

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.

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.

I think Alexandria Ocasio-Cortez’s argument about transgender bathroom bans is…pretty much perfect

Gavin Newsom Charlie Kirk 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.

Pete Buttigieg explains the purpose of DEI to regular folks.

ALS Community Files Citizens’ Petition asking FDA to Approve NurOwn Stem Cell Therapy accessnewswire.com/newsroom/en/he…