B
@BC2020ALS
ALS warrior.... Mother, wife, sister, daughter. Overcame so many obstacles in life. I'm not going down without a fight!
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Thank you @RepAnnaEshoo for continuing to lead the fight for the #ALS community. Thank you for keeping your promises to your constituent even after she passed away. @JamieRoseBerryy is smiling down from heaven. #LeadersLead @EnergyCommerce
Even more terrible @DrCaliff_FDA is a type II error leading to ⬆️ suffering & early death. Look at the data! #ALS IS CERTAIN DEATH. #NUROWN has shown to slow, halt & even in some cases reverse some decline. @SecBecerra PLZ 🛑 #FDA cruelty! Help us! We NEED REGULATORY FLEXIBILITY!
Single mother Deanna died of #ALS leaving behind her young son. There is EXTREME suffering for #ALS patients & MANY families are burying loved ones as the @FDACBER continues to delay scheduling the #Nurown AdComm hearing. CONGRESS, tell @DrCaliff_FDA to grant NUROWN Accelerated…
The #ALSclock is ticking... 🔹Feb 6 - FDA accepted @BrainstormCell's BLA 🔹113 days have passed 🔹≈ 1800 people have #DiedWaiting @FDACBER @DrCaliff_FDA Please announce the ADCOM date @POTUS @SecBecerra Wait is torture to people fighting for their lives #ALSAwarenessMonth
Another weekend of EXTREME suffering for #ALS patients & our families as the @FDACBER continues to delay scheduling the #Nurown AdComm hearing. One would never know that #ALS is a rapidly 100% FATAL disease by this timeline. 12/27/22- #FDACBER grants Nurown Type A mtg…
Today, 5-19-23, is 59 days, more than 8weeks!!!!, since you committed to AdCom for NurOwn. In that time, more than 1,000 pALS have died waiting. What in the hell is the holdup? We do not have time to wait! @FDACBER @DrCaliff_FDA @BrainstormCell @SenTedCruz @Cylebo @US_FDA
Just another reminder @FDACDERDirector @FDACBER @DrCaliff_FDA that we love our families as much as you love yours. #nurown=hope #ALS=death. Hmmmm which would you want if you had #ALS? So far you’ve 100% failed our community. Give us an ADCOMM DATE NOW! @SenateDems @HouseDemocrats
This is ALS. A 42 year old father sitting on the back porch in his wheelchair being fed by a feeding tube. The good news is I am still alive and listening to an amazing audiobook.
2nd line Chemo drug approved • 35% Partial response • 61% No response • Lasted 12 mos In #ALS • #NurOwn worked on 70%+ • People outliving natural history • No disease modifying tx for 98% @FDACBER Exercise regulatory flexibility Grant Accelerated Approval #ENDALS
Another day & no date for the #NurOwn AdComm. WHAT. ARE. YOU. WAITING. FOR??? We beg, decline & die daily. @FDACBER @FDACDERDirector @DrCaliff_FDA You continue to FAIL US! Use you REGULATORY FLEXIBILITY #Nurown=100% hope #ALS=100% death. @SenateDems @SenatorBaldwin HELP US!
I am proof that ALS can affect anyone, at any age. This flag at the #ALSinDC event on the National Mall was one of 6,000, representing the 6,000 people diagnosed with #ALS each year. Join us as we work toward an #ALSFreeWorld. Thank you @iamalsorg for all that you do. #EndALS
Yes, that regulatory flexibility @US_FDA, @DrCaliff_FDA, @FDACBER & @FDACDERDirector is the only answer that will get promising therapies/drugs into bodies for those battling ALS!
ALS Mamma bears 🐻 coming for you @FDACBER Do the right thing Regulatory Flexibility like you promised in 2019 Guidance document. We will not stop fighting for our babies ALS Terminal to Treatable 💙🥰🙏💙
It’s Mother’s Day & we Mothers & our families want more Mother’s Days together. @FDACBER @FDACDERDirector @fda safe #NurOwnWorks for many! #ALS works only for 100% death. SKIP THE ADCOMM & GO STRAIGHT TO ACCELERATED APPROVAL! Nfl ✔️ RWE✔️supportive data✔️ DO THE RIGHT THING!
. @lisamurkowski, #ALS patients now & future diagnosed NEED you to advocate on our behalf now more than ever. EXTREME suffering/deaths continue despite YEARS of Nurown safety data & UNPRECEDENTED #RealWorldEvidence of efficacy. Please don't allow the @FDACBER regulatory…
I met with some extraordinary advocates last week in DC at an #ALSAwarenessMonth event. Hearing their stories firsthand is a powerful reminder of the importance of continued education & research. Thanks to @iamalsorg & all the volunteers who took part. Together, we can #EndALS
You’re failing us, & leaving us to decline & die. @DrCaliff_FDA @FDACDERDirector @FDACBER use your REGULATORY FLEXIBILITY💪 to get us safe #NurOwn or you risk a TYPE II ERROR resulting in ⬆️ suffering. #ALS has a critically unmet need. #NurOwnWorks for some, ➡️ALS KILLS 100%⬅️
May is ALS Awareness Month and I thought I would tell you a bit more about my life with #ALS. Full video on TikTok, Instagram and Facebook. #EndALS #ALSAwarenessMonth #ThisIsALS
2 young mothers, Trickett & Beth, died of #ALS after being diagnosed at 39 & 37 respectively. HORRIFIC 100% FATAL ALS can strike ANYONE at ANY TIME. CONGRESS, help END the CRUEL @FDACBER regulatory RIGIDITY for ALS. DEMAND Accelerated Approval for safe/effective NUROWN.…
It’s #ALSAwarenessMonth, & an opportunity to reflect on the lives lost & affected by the deadly disease. @IAmALS planted 6,000 flags on the National Mall to represent the number of Americans diagnosed w/ the disease annually.
I created a YouTube channel for the ALS videos I put together. I don't know if these videos will make an impact, but I've tried to get those in power to see that ALS can happen to ANYONE. They need to see our terrible suffering & be moved to act. I humbly offer this channel as…
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