Stew

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

[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.

[Stew @jonstew1982]

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

[Stew @jonstew1982]

Today is my #daughters 15th #birthday! Very proud of the young lady she is! Never forget how much I Love You! #Forever #futuretweet

[Stew @jonstew1982]

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

[Stew @jonstew1982]

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

[Stew @jonstew1982]

#HappyBirthday to my #son! Proud of the young man you are becoming! Love You #Forever #ScheduledTweet #FutureTweet

[Stew @jonstew1982]

"A heart is not judged by how much you love; but by how much you are loved by others.” #EndALS

[Stew @jonstew1982]

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

[Stew @jonstew1982]

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

[Stew @jonstew1982]

Everyone from the #NurOwn trial and EAP needs to be heard. If the @US_FDA want answers then go to the source. #EndALS

[Stew @jonstew1982]

Kim Iversen: BIG PHARMA'S Ties To The FDA Should Be Questioned https://t.co/OMUeL2hT53 via @YouTube

[Stew @jonstew1982]

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

[Stew @jonstew1982]

Nate Smith - I Don't Wanna Go To Heaven (Official Video) https://t.co/gmk99zF4Pf via @YouTube

[Stew @jonstew1982]

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. https://t.co/yoL8ta7ocR

[Stew @jonstew1982]

@DrCaliff_FDA @CDCgov #NurOwn showed reduction in loss of function for some with #ALS which is really clinically meaning when ALS is 100% fatal. Why the double standard?

[Stew @jonstew1982]

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

[Stew @jonstew1982]

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

[Stew @jonstew1982]

Never 4get!

[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.

[Stew @jonstew1982]

@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.

[Stew @jonstew1982]

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

[Stew @jonstew1982]

I just wrote a @theactionnet letter: Ohio, Help Raise Awareness about Medical Aid in Dying legislation for the terminally ill.
Write one here: https://t.co/O0B2uVTztC