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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
Joined July 2012
  • Tweets921
  • Following179
  • Followers1.6K
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Photo by Stew (@jonstew1982)Photo by Stew (@jonstew1982)Photo by Stew (@jonstew1982)Photo by Stew (@jonstew1982)Photo by Stew (@jonstew1982)Photo by Stew (@jonstew1982)Photo by Stew (@jonstew1982)Photo by Stew (@jonstew1982)
When my last day on this Earth comes and my last breath leaves my body just know I did #Live, #Laugh & #Love as hard as I could.
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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
Image from Stew (@jonstew1982)
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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
Image from Stew (@jonstew1982)
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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
Image from Stew (@jonstew1982)
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"A heart is not judged by how much you love; but by how much you are loved by others.” #EndALS
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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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Can't get use to cough assist. Sends my anxiety through the roof which is already high to begin with . #ALS has to be the worst disease ever! 150 + years and we haven't figured shit out! #EndALS @DrCaliff_FDA @US_FDA @FDACBER
Image from Stew (@jonstew1982)
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Everyone from the #NurOwn trial and EAP needs to be heard. If the @US_FDA want answers then go to the source. #EndALS
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Kim Iversen: BIG PHARMA'S Ties To The FDA Should Be Questioned youtu.be/EQYHx7drUWE via @YouTube
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I don't have to get approval from the @US_FDA to move to a state to get access to drugs to end my life with #ALS but I have to wait for approval to access drugs/treatments that could extend my life? What kind of fucked up world are we living in? #EndALS
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Nate Smith - I Don't Wanna Go To Heaven (Official Video) youtu.be/N3pGvUFZs9I via @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) profile pictureLes Turner ALS Foundation@LesTurnerALS12 Jan 2023
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
Image from Les Turner ALS Foundation (@LesTurnerALS)
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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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Never 4get!
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Stew (@jonstew1982) profile pictureStew@jonstew198212 Sep 2022
When my last day on this Earth comes and my last breath leaves my body just know I did #Live, #Laugh & #Love as hard as I could.
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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) profile pictureAZ Latina ☮️🌊🟦
@aVoice4ALS2 Jan 2023
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
Eric was in Phase 3 NurOwn trial & then received more doses of NurOwn in Expanded Access. When Eric was in the P3 trial, he halted his progression. After the trial ended & NurOwn washed out, he started to decline again - but not as quickly as before. Over a yr after the trial ended, he rcvd 3 more doses in EAP. Again he halted his progression & regained some function. After the EAP, he declined again for a year. Then in 2022, he rcvd NurOwn in EAP. And once again, he halted his progression. Like Eric, everyone in EAP reported an objective improvement in breathing function. His pulmonologist has documented the improvement in his SVC & FVC. Eric needs more NurOwn. Eric's daughter needs her Dad. The P3 clinical trial data for people with scores of 34+ confirm Eric's patient reported outcomes. NurOwn halted progression in some people. Some people regained function. In a 100% fatal disease, some should be enough for FDA approval. Don't let Eric's Life become a Type II error.

ALT Eric was in Phase 3 NurOwn trial & then received more doses of NurOwn in Expanded Access. When Eric was in the P3 trial, he halted his progression. After the trial ended & NurOwn washed out, he started to decline again - but not as quickly as before. Over a yr after the trial ended, he rcvd 3 more doses in EAP. Again he halted his progression & regained some function. After the EAP, he declined again for a year. Then in 2022, he rcvd NurOwn in EAP. And once again, he halted his progression. Like Eric, everyone in EAP reported an objective improvement in breathing function. His pulmonologist has documented the improvement in his SVC & FVC. Eric needs more NurOwn. Eric's daughter needs her Dad. The P3 clinical trial data for people with scores of 34+ confirm Eric's patient reported outcomes. NurOwn halted progression in some people. Some people regained function. In a 100% fatal disease, some should be enough for FDA approval. Don't let Eric's Life become a Type II error.

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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/su…
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How I feel every day with #ALS! Ruining the lives of those around me that I love. #EndALS @US_FDA
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Unbelievably sad…. Heart is extremely heavy right now. Prayers for @HamlinIsland his health and the Hamlin Family now. Life is too important. Cherish every moment.
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