Robert Daniels (@rpd628) 's Twitter Profile
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

calendar_today21-01-2017 14:40:42

1,1K Tweet

786 Followers

518 Following

Shah Minokadeh, M.D. (@minoshah) 's Twitter Profile Photo

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:

Shah Minokadeh, M.D. (@minoshah) 's Twitter Profile Photo

.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, &

.<a href="/DrMakaryFDA/">Dr. Marty Makary</a> <a href="/FDACBER/">FDA Biologics</a> <a href="/SecKennedy/">Secretary Kennedy</a>, 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, &amp;
Sherry Quisenberry (@sherryquis) 's Twitter Profile Photo

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

Shah Minokadeh, M.D. (@minoshah) 's Twitter Profile Photo

.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

Shah Minokadeh, M.D. (@minoshah) 's Twitter Profile Photo

.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

HopOnACure (@hoponacure) 's Twitter Profile Photo

🎲Vegas, but make it legendary. Be at Harmony for Hope for a chance at 2 tickets to see Zac Brown Band perform at Sphere + a private blackjack table meet & greet with Hop. 💥 This is bragging rights for life. 🎟 Only at Harmony for Hope → secure.hoponacure.org/forms/harmonyf…

🎲Vegas, but make it legendary.

Be at Harmony for Hope for a chance at 2 tickets to see <a href="/zacbrownband/">Zac Brown Band</a> perform at <a href="/SphereVegas/">Sphere</a> + a private blackjack table meet &amp; greet with Hop.

💥 This is bragging rights for life.
🎟 Only at Harmony for Hope → secure.hoponacure.org/forms/harmonyf…
Shah Minokadeh, M.D. (@minoshah) 's Twitter Profile Photo

.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

Shah Minokadeh, M.D. (@minoshah) 's Twitter Profile Photo

.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

Shah Minokadeh, M.D. (@minoshah) 's Twitter Profile Photo

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

1/12 <a href="/DrMakaryFDA/">Dr. Marty Makary</a> <a href="/SecKennedy/">Secretary Kennedy</a> <a href="/FDACBER/">FDA Biologics</a>, 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
Shah Minokadeh, M.D. (@minoshah) 's Twitter Profile Photo

11/12 ...when senators Murkowski & Collins asked you about using Accelerated Approval for ALS patients facing a “very, very limited time frame” with “no hope of survival,” you committed to flexible pathways, common-sense reforms, and rare disease urgency. That’s exactly

Shah Minokadeh, M.D. (@minoshah) 's Twitter Profile Photo

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

Shah Minokadeh, M.D. (@minoshah) 's Twitter Profile Photo

ACT for ALS has built and supports a robust ALS research infrastructure. Join me in helping to reauthorize it! iamals.org/reauthorize-th…

I AM ALS (@iamalsorg) 's Twitter Profile Photo

Maggie has one wish for her birthday—a world where ALS is history. Wish Maggie a happy birthday by pushing for ACT for ALS reauthorization TODAY @ bit.ly/fundALS

Shah Minokadeh, M.D. (@minoshah) 's Twitter Profile Photo

.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…

I AM ALS (@iamalsorg) 's Twitter Profile Photo

Community, THANK YOU for 7 WHOLE YEARS of impact! We've grown our movement, built partnerships, and taken so many steps to get us closer to a world without ALS. Keep pushing with us at bit.ly/fundALS

Community, THANK YOU for 7 WHOLE YEARS of impact! We've grown our movement, built partnerships, and taken so many steps to get us closer to a world without ALS. Keep pushing with us at bit.ly/fundALS
AZ Latina ☮️🌊🟦 (@avoice4als) 's Twitter Profile Photo

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

HopOnACure (@hoponacure) 's Twitter Profile Photo

Appropriations bill H.R. 7148 has passed, increasing federal funding for ALS research to $313M – the most we’ve ever had! This happened because of your advocacy. Community is powerful! 🙏Thank your senators and representatives today who voted 'yes' for passing this bill.

Appropriations bill H.R. 7148 has passed, increasing federal funding for ALS research to $313M – the most we’ve ever had!

This happened because of your advocacy. Community is powerful!

🙏Thank your senators and representatives today who voted 'yes' for passing this bill.