Diane Gaglio @DianeGaglio44
I am a wife, mother, recent Gigi, sister, and ALS advocate for my brother, Matt United States Joined August 2020-
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Followers220
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Following155
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The ALS community is about to lose so many good people who just wanted a chance at survival. I'm devastated & I don't want Califf & Marks to be able to go on with their lives comfortably as the FDA has always been able to do after lying directly to the faces of dying ALS…
CONGRESS & @DrCaliff_FDA, the @FDACBER SHAM #Nurown AdComm hearing WASN'T set up to find the Truth. MANY with UNPRECEDENTED #RealWorldEvidence of NUROWN efficacy were even DENIED an opportunity to speak @katiecouric, the #ALS community is about to lose the most effective…
SHARE AdCom Testimony of: Dr Tony Windebank from @MayoClinic & people in #NurOwn EAP. 100% fatal #ALS yet AdCom members IGNORED the clinical observations of top #ALS researchers & #realworld experiences of the EAP participants who KNOW NurOwn improved how they "feel &…
A bit of perspective for the currently healthy public. If I woke up today & could walk, talk, eat, OR breathe on my own I would experience unimaginable joy. "ALS doesn't care who you are." #ALS has taken EVERYTHING from me & can happen to YOU OR YOUR LOVED ONE. I urge you to…
I am a board-certified anesthesiologist and pain management physician with ALS. I'm so tired of people talking about NurOwn data without understanding the trial when their lack of understanding is killing me, thousands of my friends, and their children. 1. ALS endpoints are…
I am a board-certified anesthesiologist and pain management physician with ALS. I'm so tired of people talking about NurOwn data without understanding the trial when their lack of understanding is killing me, thousands of my friends, and their children. 1. ALS endpoints are…
. @SenSchumer, thank you for being a part of the 118th House, which included $75 million in funding for ACT for ALS expanded access programs (EAP). This will have a real impact on the ALS community and research. #ENDALS
Remember our pursuit for the ACT4ALS? Cuts to Federal spending may jeopardize the $75M for ALS expanded access research programs (EAP). This has to be STOPPED. Contact your congresspeople👇👇We deserve this funding! RT this, plz & let’s #EndALS!
Remember our pursuit for the ACT4ALS? Cuts to Federal spending may jeopardize the $75M for ALS expanded access research programs (EAP). This has to be STOPPED. Contact your congresspeople👇👇We deserve this funding! RT this, plz & let’s #EndALS!
. @gillibrandny, thank you for being a part of the 118th House, which included $75 million in funding for ACT for ALS expanded access programs (EAP). This will have a real impact on the ALS community and research. #ENDALS
. @RepMikeLawler, thank you for being a part of the 118th House, which included $75 million in funding for ACT for ALS expanded access programs (EAP). This will have a real impact on the ALS community and research. #ENDALS
Don't you DARE say you thought the patients' testimony was "compelling" or you are "sympathetic" or you "understand" their pain or that you were "moved" by them or "your heart bleeds." INCREMENTAL changes aren't enough? You don't get to decide what matters to patients when you…
Thank you, Dr. Windebank @MayoClinic. Hopefully your comment that you “have never seen improvements like this before” with #NurOwn, will be heard. Powerful. #NurOwnNow #NurOwnWorks #everypointmatters #AdComm
This is makes me sick! It’s a horrible decision
If you are still against Nurown. you need to check for a heartbeat, or a heart at all.
But Jesus looked at them and said, "with men this is impossible, but with God all things are possible."
I really wish ALS patients lives mattered to @US_FDA Never, ever try to tell someone with a terminal illness what is or isn’t hope! #Shameful #FailedByTheFDA #OurLivesMatter #ALS
Successful, credible, honest, beautiful. Tragically, now gone because of a 3+ year debate that should never have been. If denying terminal #ALS patients even one hope with significant data, safety, and such obvious clinical outcomes isn't a stain on a civilized society, what…
I understand the frustration of #ALS drugs not being covered by some insurances, and efforts by groups to change that. Myself, I’m frustrated by the lack of caregiving help covered by @MedicareGov and other insurance companies. 1/3
ALS suffering & loneliness feel unbearable some days. It's hard to accept that there are people in this world who are healthy & are actively opposing progress & regulatory flexibility for this horrific disease. We have to fight for our own survival while we suffer horribly. So…
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779 Followers 5K Following United States Army general who has been serving as the 20th chairman of the Joint Chiefs of Staff since October 1, 2019. No DMs if I have not followed you.
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All is Well: Lessons @AllsWell333
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car128 @crayne128
234 Followers 317 Following homesteader, lover of sustainable living, hater of ALS for stealing it all away from me, and for threatening to steal my family from me. We need NurOwn now!
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TeamJacobWV @TeamJacobWV
806 Followers 307 Following Jacob Harper, 24, diagnosed with ALS in March, 2022! Fighting for a cure through a clinical trial at Ohio State University! "Genetic FUS-Gene Mutation" (P525L)
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Lisa Cohen @littleengine210
24 Followers 134 Following Never say never and don't stop believing! Married mom of 2 great kids, I have PLS #ALS #PLS
Nate Methot @a_life_derailed
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Sometimes I Shake @shake_sometimes
245 Followers 466 Following feature-length documentary about life, death, love & jazz 🎥🎶 #endALS #parkinsons #sometimesishakemovie directed by @jared_cal, produced by People People Media
Claudia Winkleman @Claudiawinklefx
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234 Followers 317 Following homesteader, lover of sustainable living, hater of ALS for stealing it all away from me, and for threatening to steal my family from me. We need NurOwn now!
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Jill Brattain @MommaJillB
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Lesha Jett @ImLolly713
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Dr. Stacy Lewin @FarberStacy
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Grant W Smith @GWSmith14
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2.8M Followers 74 Following Welcome to the positive side of 𝕏. I’m Sander from the Netherlands. All copyrights belong to their respective owners! DM for credits/removal/submission!
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Michael Moutsoulas @MMoutsoulas
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Chris Snow @ChrisSnowCGY
26K Followers 194 Following Husband & Dad | Walking science experiment | Determined to beat ALS & win a Stanley Cup | Citizen of both 🇺🇸🇨🇦 | Assistant General Manager, Calgary Flames
Sarah Nauser @SarahNauser
12K Followers 514 Following Dominating ALS one day at a time. “Love the life you live and live the life you love” Go Royals! #FightLikeAGirl
ALS Advocacy @alsadvocacy
12K Followers 2K Following ALS = Lou Gehrig's Disease Thought it had been cured by now? Still no known cause. Still no cure. Still no treatment. Still quickly fatal. Still outrageous.One of the most heartbreaking moments in all of Season 1.
Maybe "what on earth?" is the wrong question...
Paralyzed man who can walk again shows potential benefit of stem cell therapy This is a spinal cord injury, but I can only imagine what it would mean to an #ALS patient to walk again. I would lose it. abc7chicago.com/chris-barr-par…
@US_FDA @SteveFDA @DrCaliff_FDA @als_now @POTUS @VP @HouseGOP @HouseDemocrats @alsassociation @RTEBrainstorm Why does the ALS Community continue 2 get no attention? It’s a disgrace how u prevent treatments that has helped many trial participants. NurOwn treatments has helped many
My family is making beautiful memories at @WaltDisneyWorld this week. Though I am too weak to travel, they surprised me by bringing along a much younger version of me - aka Steve on a stick. I can confirm the Disney resort pool is splendid. Seize the day.
@Morbidful Landowner David Hampton planted larch pines in a douglas fir forest in Oregon in the shape of a giant, 300 feet smiley face 🙂 Every autumn the larch pines turn orange and the smiley face stands out
Thanks to ALS I cant do the Running Man so instead I’ll do The Wop because ITS MY MOTHERLOVIN’ 49’th BIRTHDAY!!!! @mrvincecarter15 #GoHeels #EndALS
ALS-THE FORGOTTEN DISEASE/AUTISM-NOT BROKEN @brainmatters10 @EBraeden @MinoSean People with disabilities are often made fun of or ignored EVERYONE is made in God's Imagine Look into a mirror, think it could be you I am saddened how people treat each other Be kind Help not Hurt
Thanks for being patient friends and family. Eyes are feeling better. I can open both eyes but I have residual stinging so writing slow
When I sit quietly with God instead of trying to figure everything out, He takes my anxiety & replaces it with His peace, wisdom & security.
Today was my 1 year anniversary of doing in-home PT. If you asked me 1 year ago if I would still be walking today, I would have said most likely not. Not only am I still walking, but today I walked 40 feet. Good night moon.
Nothing as fierce as a mother fighting for her child's life. #ALS will take their children's lives. You have the chance to give them more time. Please do the humane thing. @DrCaliff_FDA @FDACBER #EndALS
With tears flowing… I learn of more and more pALS who actually received NurOwn, my heart breaks over and over and over again. When my daughter was diagnosed with this F**ing monster in 2020, there was so little around that held any promise…aside from NurOwn. I wanted Alex to…
@LorriCav My mom died from ALS in 2013. We would have taken any chance to help her.
@LorriCav Definitely yes! My mom passed from ALS in 2007. What I wouldn’t have given to have had some hope for her. I’ll never forget the pain, hopelessness, and anguish she went through praying for me to help her die each day. I felt so helpless!
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