Robert Daniels
@rpd628
Blessed husband, father & grandfather and ALS warrior.
I want to make a difference in the fight for a cure, if not for me but for those that follow me.
ID: 822816194763878405
21-01-2017 14:40:42
1,1K Tweet
786 Followers
518 Following
He saw undeniable benefits. Yet 27yo Kade Simons died because rigid U.S. FDA denied him #NurOwn access post-trial. 15 YEARS post-Phase 1, #ALS patients watch peers die while treatments stall. Where is the cancer-level urgency, Secretary Kennedy Dr. Marty Makary FDA Biologics? Marty Makary MD, MPH:
.Dr. Marty Makary FDA Biologics Secretary Kennedy, as a physician with ALS, I’m pleading for justice NurOwn’s Phase 3 trial-UNDENIABLE 5-yr survival data (90% vs 10% typical), UNPRECEDENTED Patient Reported Outcomes, biomarkers PROVING action on neurodegeneration, neuroinflammation, &
The #ALS community needs support from Washington on #NurOwn. Both ALS and #PLS need accelerated approval to improve quality of life. Plz read the data and the petition! Dr. Marty Makary FDA Biologics Secretary Kennedy Sen. Lisa Murkowski Sen. Susan Collins
Our #ALS tribe will always be grateful for Phil Green. He was a fierce fighter for our tribe and an all around good human. Our world is dimmer without Phil. #LouGehrigDay #EndALS
.Dr. Marty Makary Secretary Kennedy FDA Biologics:As a physician DYING from the nightmare of ALS—the most brutal/hopeless killer—I'm begging you: DON'T DELAY Nurown any longer Every wasted day DOOMS more lives. Review our NUROWN citizens petition My OpEd:newsweek.com/doctors-plea-n… #ALS #Nurown
.FDA Biologics Secretary Kennedy Dr. Marty Makary, It's 89 DAYS since our #NUROWN Citizens' Petition Every day of delay dooms more ALS patients. No words can convey how HORRIFIC the suffering is while we wait on the FDA #NUROWN survival data: UNPRECEDENTED in ALS history & UNAVAILABLE at
.FDA Biologics Secretary Kennedy Dr. Marty Makary, 97 DAYS you've had our #NUROWN Citizens' Petition Every day of delay dooms more ALS patients. No words can convey how HORRIFIC the suffering is while we wait on the FDA #NUROWN survival data: UNPRECEDENTED in ALS history & UNAVAILABLE at
.FDA Biologics Secretary Kennedy Dr. Marty Makary, We're still fighting for our lives. It doesn't seem like #FDA leadership is following up on their promises with action for #ALS. It is tough to see any hope for a disease where we're all SCREAMING, but there is no sound 106 DAYS you've had our
1/12 Dr. Marty Makary Secretary Kennedy FDA Biologics, As one of the (cell therapy) NurOwn Citizens' Petitioners fighting for my life—and the lives of tens of thousands with 100% fatal #ALS—I'm terrified For 156 years, this disease has killed everyone with ZERO treatments providing any hope of
12/12 U.S. FDA FDA Biologics Secretary Kennedy Dr. Marty Makary @VPrasadMDPH: Please don't let this be another broken promise. Grant accelerated approval for NurOwn NOW—with Phase 4 confirmation, biorepository, & natural history database. People are dying daily. We can't wait. 178 days
Please repost, and quote, all 12! Tag all u can. Mark Defund The ALSA Just a girl w/#ALS juan Girl Travelin Alone Christy A. ALS News Today Project ALS Deputy Commissioner Kyle Diamantas ALS_NewMexico No More Excuses ALS Watchdogs! ALS United Chicago Vita Kalinsky Jan Schakowsky gina Gibson SeanBoss Rain Consulting Group Michael Wilson
.Dr. Marty Makary Secretary Kennedy FDA Biologics Vinay Prasad MD MPH, while you tout your accomplishments, nothing has changed in ALS even since the first case was identified in 1869 ZERO CHANCE OF SURVIVAL WITH CURRENT FDA-APPROVED TREATMENTS. #NurOwnWorks Dr. Mehmet Oz DrOzCMS today.com/parents/family…
Dr. Marty Makary How about going on the offense against #ALS? Secretary Kennedy promised he'd end the war on stem cells. You can make that a reality by approving #NurOwn, the only disease modifyng treatment that is extending survival in sporadic ALS. Read the 309 pg citizens petition at