Living with ALS, “If you’re not part of the solution then you are the problem.” Love my wife & kids more than ANYTHING!

Joined July 2012
177 Photos and videos
Pinned Tweet
12 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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2 Feb 2024
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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19 Sep 2023
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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27 Jun 2023
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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14 Feb 2023
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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2 Feb 2023
#HappyBirthday to my #son! Proud of the young man you are becoming! Love You #Forever #ScheduledTweet #FutureTweet
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25 Jan 2023
"A heart is not judged by how much you love; but by how much you are loved by others.” #EndALS
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18 Jan 2023
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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18 Jan 2023
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
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15 Jan 2023
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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14 Jan 2023
Kim Iversen: BIG PHARMA'S Ties To The FDA Should Be Questioned youtu.be/EQYHx7drUWE via @YouTube

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14 Jan 2023
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

ALT Confused Perplexed GIF

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13 Jan 2023
Nate Smith - I Don't Wanna Go To Heaven (Official Video) youtu.be/N3pGvUFZs9I via @YouTube

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13 Jan 2023
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
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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11 Jan 2023
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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7 Jan 2023
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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6 Jan 2023
Never 4get!
12 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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4 Jan 2023
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
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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3 Jan 2023
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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3 Jan 2023
How I feel every day with #ALS! Ruining the lives of those around me that I love. #EndALS @US_FDA
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Stew retweeted
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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