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Stig
910 posts
Stig
@stig
Gadfly, change agent, intrapreneur. I deny being the Stig on Top Gear.
DC Katılım Mart 2007
0 Takip Edilen659 Takipçiler
Stig retweetledi
@giapolo86 Such a bold fight, and such a strong advocate you became. We are inspired by both your stories. Sending love.
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Tonight, surrounded by family and loved ones, Dad went home to heaven. His peaceful journey was preceded by a tenacious fight against ALS. His love, his heart, his soul, will live on forever.
We love you, Dad. Always have. Always will.
Safe travels to heaven, Dad. Love you 🤍
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Stig retweetledi
A few reminders of why we exist:
1. pALS and cALS carry an enormous burden of managing care outside the clinic, included finding DME, mental health, PT, etc.
2. We bring ALS-trained neurologists to all 50 States
3. We reach patients we are often left out of ALS clinical care...
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Cool study from my Alma Mater about the possibility of biomarkers for ALS (MND) being present > 10 years before clinical neurological onset.
abdn.ac.uk/news/16457/
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Stig retweetledi
Rather than wait eight weeks for the hearing transcript, I wanted to share with everyone my testimony from the AMX0035 AdCom today. There is only one right answer to today's AdCom: recommend approval.
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Stig retweetledi
It's actually bad luck to say MacBook inside an office. You have to call it 'The Scottish Laptop'
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Stig retweetledi
Hey rest of the world:
If you care about ending a 160 year old disease that is still 100% fatal and will affect 1 in 300 people alive today, please retweet this tweet or @jonstew1982 tweet.
Sincerely,
A guy with ALS who has a lot left to do in this world
#ItsTime #EndALS
Stew@jonstew1982
I feel as though the #ALS community is confined to it's own sound proof dome. I follow #pALS/#cALS, they follow me. It's great, but how do we reach the rest of the #world to encourage them to act to help #EndALS before this #nightmare knocks on their door.
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Stig retweetledi
@MaryKusior @derekgunz Hopewell Pharmacy in NJ, compounds and ships the SP. Good experience so far. hopewellrx.com
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@derekgunz Talk to synapticure. A prescription for the amx0035 components is readily available.The sodium phenylbutyrate is gotten at a compounding pharmacy and TUDCA is gotten on internet without a prescription. If you are able to pay yourself, the cost total in my experience is $850/mo.
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I hear it’s going around. I plan to get the vaccine.
David Sinclair@davidasinclair
Me, to my 82 year-old dad: “You still don’t have any diseases!” Dad: “Yes I do. I’ve got aging.”
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This is a *brilliant* idea. I will buy all my thin mints from Baltimore troops, paying with RVN. @Ravencoin #SavannahSmilesNevermore
Josh Elman@joshelman
Hear me out: Girl Scout cookies should only be payable by crypto. Each troop can pick which blockchains they want to support. I just bought so many boxes 🙈
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Excited to see the launch of @synapticure and to glimpse the future of personalized care for ALS patients. Kudos to @bsw5020 and @pwallach87 for making this dream happen. I can vouch for the competent and compassionate care that Anna and the team provide.
Sandra Abrevaya@sabrevaya
Thank you to the incredible @gwenpetersen7 for starring in this video on how Synapticure works featuring an amazing real patient and real care coordinator. This quick video gives you a sense of everything we're focused on today to deliver better care for everyone living with ALS.
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