Smithstrongmom
@smithstrongmom1
Fighting for my son with ALS
ID: 1249428246501810176
12-04-2020 20:04:56
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To all my Mama Bear friends whose kids are fighting #ALS: I'm not sure where you get your strength amidst your grief & anger. Your child's life matters. You deserve a right to be heard. We will fight without remorse until our govt listens. President Donald J. Trump First Lady Melania Trump #motherslove
I am dying of #ALS WITH NO CHANCE OF SURVIVAL after being diagnosed at 35 years old, I have been left to die denied #NUROWN due to the CRUEL FDA Biologics regulatory RIGIDITY for 100% FATAL ALS, despite witnessing YEARS of UNPRECEDENTED #RealWorldEvidence of efficacy. Dr. Robert M. Califf,
"On 11/1/2019, nearly 1 year after his first treatment, Matt’s ALSFRS-r was 27. 6 points higher than it was prior to treatment." - Deb Bellina U.S. FDA regulations.gov/comment/FDA-20… Dr. Robert M. Califf FDA Biologics CDER Director Matthew Bellina I AM ALS Dr. Stacy Lewin I’m Dying To Tell You Podcast with Lorri Carey Mitze Klingenberg BSN, RN
June 2019-23: 🔹Josh declined from a 40 to a 33 🔹7-point loss in 48 mos = 0.15 pts/mo #NurOwn halted his progression when he got it & drastically slowed his #ALS decline overall Believe his #RWD #NurOwnWorks regulations.gov/comment/FDA-20… Dr. Robert M. Califf FDA Biologics Neera Tanden🌻
36-year-old Eddie died of #ALS WITH NO CHANCE OF SURVIVAL >90% of people with HORRIFIC 100% FATAL #ALS have no family history. You or your loved one could be next CONGRESS, DEMAND an END to the CRUEL FDA Biologics regulatory RIGIDITY. Dr. Robert M. Califf, grant #NUROWN Accelerated
Obstetric anesthesiologist, Dr. Stacy Lewin’s statement to the FDA Biologics in the fight for her life. regulations.gov/comment/FDA-20… Diagnosed in 2021. Please hear her pleas. She needs #NurOwnNow to help her in battle with #ALS.
Guide to Submitting Written Testimony to the FDA about NurOwn iamals.org/updates/guide-… Bart Baker Muscular Dystrophy Association @PMelmeyer @alsagoldenwest @ALSphiladelphia Please write a comment in this document. It is crucial
America’s got talent has a golden buzzer for the people are doing great and go to the live show. Please FDA, can we get a golden buzzer for NurOwn so we can go to the live show? Bart Baker Elon Musk CBS News Bret Baier Senator John Boozman Senator Cotton Rep. Steve Womack
Thanks Mark bedwell AlS for showing us what Matthew Bellina could do after receiving #NurOwn from BrainStorm through RTT. Matt received 7 doses of the therapy. Upon his first dosing his ALSFRS-R score was a 21 a year later he was at a 27. This 6 point gain is HUGE!
"If #NurOwn were an option, the world would have his data & he’d have gladly paid for the possibility of contributing it to a knowledge base that someday will help others survive where he could not... now his data is gone" regulations.gov/comment/FDA-20… FDA Biologics Dr. Robert M. Califf #ALS
.Dr. Robert M. Califf FDA Biologics, HOW MANY MORE HAVE TO DIE WITHOUT HOPE? #ApproveNurown #NurownWorks #NurownIsSafe #CriticalUnmetNeed Rep. Brett Guthrie Larry Bucshon, MD Rep. Anna G. Eshoo U.S. Senator Bill Cassidy, M.D. Markwayne Mullin Sen. Lisa Murkowski @SenatorBraun Rep. Jason Crow Ken Calvert Rep. Brian Fitzpatrick 🇺🇸
A plea for all of the Chapters that sued and left the National ALS Association, to stand with the community to get Nurown approved @ThurmanTough Mark Defund The ALSA Smithstrongmom Mitze Klingenberg BSN, RN Lorri Cavaliere Sarah Nauser Bart Baker @alsagoldenwest ALSUnitedGNY
"We must work quickly to save the next ALS vintage & possibly some of us from this one. Please hurry! The waiting is deadly." Sandy Morris Thank you, Joe, for your testimony for today's # NurOwn's ad comm; it was so powerful. 🌻🌻🌻 #NurOwnWorks #EveryPointMatters
Thank you, axeALSFoundation, for speaking out today regarding Eric's experience with #NurOwn stating that "Without NurOwn, he has declined" and "NurOwn enhances his quality of life."
ALS Uncensored 🏴☠️ The #NurOwn AdCom on Sept 27th was like: Russian trial of an American citizen... Then Pharma media was like Russian TV reporting on the Ukraine War. Pharma media has NOT done Due Diligence. They: 🔹Don't understand #ALS 🔹Don't understand flawed subjective tool used for