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
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
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
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
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
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
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. https://t.co/yoL8ta7ocR
@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?
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
@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.
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
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