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Stew
921 posts
Stew
@jonstew1982
Living with ALS, “If you’re not part of the solution then you are the problem.” Love my wife & kids more than ANYTHING!
Ohio, USA Katılım Temmuz 2012
181 Takip Edilen1.6K Takipçiler
Happy Birthday to my son! You've officially become a teenager! I hade so much left to teach you but I know you've got the ability to solve whatever comes your way! I love you 4ever! #FutureTweet #AlwaysWithYou
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Today is my #daughters 15th #birthday! Very proud of the young lady she is! Never forget how much I Love You! #Forever #futuretweet
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Today is my 7th Wedding Aniversary! Due to #ALS I don't know if I'm still alive to tell my wife SHE IS THE BEST THING THAT EVER HAPPENED TO ME! I Love You Rebecca!
#ScheduledTweet #FutureTweet #ForeverLove
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Happy Valentines Day to my lovely wife. I hope you never forget how much I love you. #futuretweet
I may not be here physically but I'll always be by your side spiritually! #LoveIsForever
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#HappyBirthday to my #son! Proud of the young man you are becoming! Love You #Forever #ScheduledTweet #FutureTweet
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3 Years ago I took my son bowling while we waited for my daughters volleyball practice to end. It was the day I knew something was wrong with my right hand. Thinking it was just a pinched nerve in my shoulder or neck. Nothing would prepare me for the #ALS diagnosis 6 months later
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Kim Iversen: BIG PHARMA'S Ties To The FDA Should Be Questioned youtu.be/EQYHx7drUWE via @YouTube
YouTube
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Nate Smith - I Don't Wanna Go To Heaven (Official Video) youtu.be/N3pGvUFZs9I via @YouTube
YouTube
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Sign me up if you need a human to trial. I am just waiting for death. People with #ALS should be able to volunteer for any research with or without @US_FDA approval! I can't think of a worse way to die aside from #ALS. #CutTheRedTape @LesTurnerALS
Les Turner ALS Foundation@LesTurnerALS
Could we replace lost or damaged neurons in people with #ALS? Researchers at @NUFeinbergMed and Les Turner ALS Center @NMNeurology have created the first healthy, mature and functional 'lab grown' neurons, which hold promise for transplantation therapies. buff.ly/3GXmHAy
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The bivalent COVID-19 vaccines have been associated with a significant reduction in hospitalization and death in all populations examined, which is clinically meaningful. See this page on COVID-19 hospitalizations from @CDCgov. gis.cdc.gov/grasp/covidnet…
Eric Topol@EricTopol
The Covid bivalent vaccine booster works better than expected. I've reviewed the cumulative data erictopol.substack.com/p/the-bivalent… That's in contrast to a @NEJM essay today and 2 lab studies that used a pseudovirus assay without assessing the XBB variants
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Hoping the @US_FDA @FDACBER @DrCaliff_FDA understand how important today's meeting is. Please help #ALS people keep moving in the direction to someday make ALS a treatable condition. Please grant a Advisory Committee meeting to hear from the people on the front lines #EndALS
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If my #ALS ridden body was a car this is what my dash would look like as I speed into on coming traffic at night with no headlight. #EndALS @DrCaliff_FDA @US_FDA @FDACBER #broken #NurOwn #NoAdComNoVoice #DyingWaiting
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@leanne_yacyshyn I am terrified of going to my local hospital. I fear the lack of knowledge of ALS would be my demise. Hoping you start feeling better my friend.
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My 1st year with #ALS my progression was slow losing approx 0.5 pts/mth 43-36. My second year I began losing 2+ pts/mth 36-10. Where would I be if I would've received #NurOwn when I was first diagnosed. It certainly couldn't be worse than I am now. @US_FDA @DrCaliff_FDA @FDACBER
AZ Latina ☮️🌊🟦@aVoice4ALS
29 yo Eric was a fast progressor, losing 2 pts/mo on 48-point scale. Lifespan was 2 yrs. Nearly 4 yrs from #ALS symptom onset, Eric is still walking, talking & making memories w his 2 yr daughter. Eric knows #NurOwnWorks @GeoffRBennett @IAmAmnaNawaz Break the #NurOwn story
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I just wrote a @theactionnet letter: Ohio, Help Raise Awareness about Medical Aid in Dying legislation for the terminally ill.
Write one here: actionnetwork.org/letters/suppor…
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