Living with ALS since mid 2019. I carry the C9orf72 mutation. Living everyday with focus on the present. Grateful for the wonderful & powerful ALS community 💕
San Francico area, California
Joined January 2011
- Tweets718
- Following452
- Followers640
- Likes3.2K
Laura Hanson retweeted
The new UK Motor Neuron Disease Research Institute (UK MND RI) launches today, bringing together a virtual network of MND labs, clinical centres and researchers carrying out world leading research across the UK to accelerate the search for a cure for #MND. ukmndri.org/
Laura Hanson retweeted
I AM ALS will host a town hall with BrainStorm Cell Therapeutics on November 7th at 1pm ET to hear directly from BrainStorm about next steps, clarify any questions or uncertainty about their process with the FDA, & learn about the path forward for NurOwn. iamals.org/action/brainstorm…
Laura Hanson retweeted
The Senate Aging Committee hearing on the Promising Pathway Act is TOMORROW! We are so excited to hear from co-founder @bsw5020 and Board member Peggy Plews-Ogan in the hearing, and from advocate Tim Tobin at the press conference. Join us in DC if you can: iamals.org/action/promising-…
Laura Hanson retweeted
I call on @BrainstormCell to hold a Town Hall for the ALS community, so that it can explain why it withdrew the BLA before the PDUFA date.
Also, please explain how this was the best decision for NurOwn and the ALS community.
You owe this to us after we fought for a yes.
BrainStorm Cell Therapeutics to Meet with US FDA to Discuss Development Plan for NurOwn as a Treatment of ALS ir.brainstorm-cell.com/2023-…
Laura Hanson retweeted
To the Project ALS Family: We are proud to announce that prosetin, a novel ALS drug candidate developed at the Project ALS Therapeutics Core at Columbia, has been acquired for commercial development by a new company, ProJenX. Read the press release here: prn.to/3JtRymM
Laura Hanson retweeted
we are #DyingWaiting and we need your help @JDVance1 @SenSherrodBrown @GregLandsman @bradwenstrup @POTUS
Shame on @DrCaliff_FDA & Director of the @FDACBER, Peter Marks.
There is the blood of #ALS patients on both of your hands.
#NurownWorks #NurownIsSafe #CriticalUnmetNeed #BloodOnYourHands
You killed an effective treatment for hopeless #ALS patients.
Congress, it may be you or your loved one tomorrow who is diagnosed with this DEATH SENTENCE because of this continuation of the CRUEL #FDACBER regulatory RIGIDITY for a disease WITH NO SURVIVORS since 1st identified in 1869.
@PatriciaManhar1 @ShereeWLWT @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepDebDingell @RepMMM @RepAnnieKuster @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @SenatorWicker @PattyMurray @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @chairmang @RepDonBacon
Laura Hanson retweeted
If you’re the parent of a child who has a disease that’s going to kill them, you want the technology now, not years from now
~ Dr Peter Marks of @FDACBER
People with ALS need #NurOwn NOW
Not years from now.
30k People with #ALS are going to die in the next 5 years while we wait for another Phase 3 trial.
Parents like @klink52 @Smithstrongmom1 watched NurOwn improve how their sons feel & function. They have clinical proof & the testimony of their world renowned ALS neurologists who said:
NurOwn works on a SIGNIFICANT NUMBER of people, causing them to STABILIZE in a way that they have NEVER seen in any other trial in their 40 years of treating people with ALS
@POTUS @FLOTUS @neeratanden @VP @SecBecerra @PressSec @DrCaliff_FDA
Laura Hanson retweeted
InvestorNewsBreaks – Clene Inc. (NASDAQ: CLNN) ‘Innovates’ Investigational Drug with Patented Nanotechnology networknewswire.wordpress.co…
Laura Hanson retweeted
BrainStorm Cell Therapeutics to Meet with US FDA to Discuss Development Plan for NurOwn as a Treatment of ALS ir.brainstorm-cell.com/2023-…
Laura Hanson retweeted
Time to hold a benefit concert so we can fund prolonged life for #ALS patients. Without the #NurOwn treatment, patients who saw benefit will decline faster and lose improvement in how they feel and function. @RollingStones @PaulMcCartney @BonJovi @eltonofficial @QueenWillRock @taylorswift13 @kiss @lukebryan @brandicarlile @gunsnroses @DefLeppard @zacbrownband @MileyCyrus @katyperry @LionelRichie @drake @MorganWallen @oliviarodrigo @lukecombs @edsheeran
Brainstorm has withdrawn the #NurOwn BLA (application for FDA approval).
You can listen to the recording at the number below.
Brainstorm announced that they will be trying to find funding to do another Phase 3 trial to prove to the FDA what so many people in the trial already know. #NurOwnWorks. Unfortunately, this means that no one will be able to get NurOwn outside of a future Phase 3 trial.
Tragically, the AdCom & FDA IGNORED:
🔹 #RealWorldEvidence from people who have documented clinical data & video proof that NurOwn improved how they felt & functioned.
🔹 @MayoClinicNeuro Tony Windebank who testified that NurOwn worked on a "significant number" of people & he's never seen people stabilize like this in his 40+ yrs as a neurologist
🔹 Proof that NurOwn met its pre-specified secondary endpoint for people 35+
🔹Post hoc data that proved NurOwn worked on people with scores 27+
🔹Biomarker data that NurOwn had a biological impact on people across the disease spectrum -- but only those in the NurOwn arm, not on placebo.
Because of our broken regulatory system for fatal heterogeneous #RareDiseases & the flawed ALSFRS-R, any possible approval will now be delayed by years and tens of thousands of people with #ALS will #DieWaiting.
We will not give up the fight & we'll continue to share the inhumanity with Congress but that will only change the laws for the future.
I am so sorry for everybody in the community.
Everything about this is inhumane.
#endals
@RepAnnaEshoo @RepSchakowsky @RepQuigley @RepAndyHarrisMD @RepBradWenstrup @DorisMatsui @SenAmyKlobuchar @SenatorWicker @chairmang @ChrisCoons @SenatorBraun @SenGillibrand @SenSchumer @RepJeffries @TeamPelosi @SenSanders @SenBobCasey @SenBillCassidy @JohnFetterman @SenJohnThune
@HouseCommerce @EnergyCommerce
@GOPHELP @HELPCmteDems
Laura Hanson retweeted
Tell Congress about your ALS story, so they understand the urgent need for faster access to promising therapies:
iamals.org/updates/senate-ag…
Laura Hanson retweeted
Join Synapticure's co-founders Nov 10th to screen their documentary, NO ORDINARY CAMPAIGN, which shares how they transformed patient advocacy in #ALS & other #neurodegenerative diseases. Now that patient-centric vision is the cornerstone of our mission.
vist.ly/dhhr
Laura Hanson retweeted
This small real-world ALS case series demonstrates that combination therapy is feasible and beneficial.
virtual.oxfordabstracts.com/…
from 2023 NEALS Symposium
Laura Hanson retweeted
I will always be amazed at how much the @iamalsorg community has done in 5 years. I hope you will take a minute to read the impact report and see just how much a small nonprofit can do to change the world.
iamals.org/updates/five-year…
Laura Hanson retweeted
I AM ALS is pleased to see that the National Institute of Neurological Disorders and Stroke (NINDS) announced three Expanded Access Program (EAP) grants to help people with ALS who do not qualify for clinical trials. Read our full statement: bit.ly/3LPzreA