minna

I lost my loving husband to ALS in 2016. I'm fighting for treatments that should have been available to him and NOW should be available to ALL ALS warriors.

[minna @minnadillard]

My girls and I at Truist park in Atlanta for #LouGehrigDay
@Braves
@MLBONFOX
@MLBONFOX
@MoonbeamNinja
@alsadvocacy
@ALSAwareness2

[Girl Travelin Alone @CathyStandish]

#ALS doesn’t kill softly. Her voice will be missed forever. The world is in mourning. Roberta Flack is gone.

https://t.co/QAsfq1huJ6

#ListenForAWhile #EndALS #MondayMorning #SheSangAGoodSong

[Girl Travelin Alone @CathyStandish]

What is rare about #ALS is the treatment, the cure.

“Alone we are rare. Together we are strong.”

#RareDiseaseDay #FridayMotivation #EndALS

[Girl Travelin Alone @CathyStandish]

We can’t do it alone, so may we all come together in our hope for peace from neurodegenerative disease.

#EndALS #ParkinsonsAwareness #MS #EndALZ #LetsTalkAboutHD #MND @synapticure @MichaelJFoxOrg ✌️

[ALS Network @youralsnetwork]

Did you know that, every 90 minutes, someone is diagnosed with ALS and someone passes away from it? May is #ALS Awareness Month, and we need people like YOU to share this post in support of #ourALScommunity. See other ways that you can take action at https://t.co/JHr4kmiZpZ.

[ALS Network @youralsnetwork]

Did you know that an ALS diagnosis can take months or even years? ALS is often diagnosed by ruling out other diseases. ALS is typically a disease that involves a gradual onset.
May is #ALS Awareness Month. YOU can help raise ALS awareness at https://t.co/JHr4kmirAr.

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

Q: How do we speed up #ALS drug development & approvals?
A: Gather more data from more people in the "ALL ALS" study.

⬇️Register for this NEALS webinar on May 16 at 11 ET to learn about the "ALL ALS" study.
https://t.co/aqrYwXnBDG

"ALL ALS" is the result of the #ACTforALS, which 1000s in the ALS community fought to pass. With ACT for ALS legislation & Congressional appropriations, NIH funded the “ALL ALS” consortium to collect, organize & optimize ALS clinical research in the US.

The study will collect & store a wide range of data from:
🔹People living with ALS (symptomatic cohort)
🔹Asymptomatic ALS gene carriers
🔹Healthy controls with no risks or symptoms for ALS

Collected data will include:
🔹 Biofluids to identify & validate ALS biomarkers
🔹 Genomic tissue
🔹 Digital biomarkers
🔹 Longitudinal clinical data

Importantly, to speed up getting #DrugsinBodies, biomarkers are critical to utilize the FDA's Accelerated Approval pathway.

Thx to my crew who did 100s of Congressional zooms & to the NME community who sent tens of thousands of emails to help get this Bill passed. This study is happening because of YOU!

@klink52 @LorriCav @KandySimons @BridgetRebecca4 @biggMoe_effALS @nicolecimbura @Smithstrongmom1
Mayank & @Mayuri_Saxena @JamieRoseBerryy @sandymorris333 @PatriciaManhar1 @Robdback @MinoShah

ALL ALS is the culmination of decades of ALS research collaborations by top investigators across the US. But it was made a reality by the ACT for ALS -- which was passed because of the commitment & perseverance of the #ALS community & because of the support of our Congressional Caucus members like @RepMikeQuigley @RepAnnaEshoo, @rosadelauro, @JeffFortenberry (Reyn Archer), @ChrisCoons, @lisamurkowski, @SenatorBraun & @SenSchumer. Working together we are going to change the future of ALS.

The ALL ALS consortium will be run by 2 coordinating centers at @BarrowNeuro & @MGHNeurology, with clinical sites across the US. Join the webinar to learn more!

#EndALS #ALSawarenessmonth
#ALSAwareness

[Girl Travelin Alone @CathyStandish]

Our community is so thankful to @RepMikeQuigley for all that he gives and for all that he does for ALS patients and their families.

To know that we are not in the fight to #EndALS alone means everything,

@iamalsorg #ALSAwarenessmonth

[Sherry Quisenberry @sherryquis]

PrimeC has been shown, per PARADIGM trial data, to significantly slow ALS in patients who are newly diagnosed or at high risk of progression. https://t.co/vg3kGn8LfF #PrimeC #ALSProgression

[Shah Minokadeh, M.D. @MinoShah]

The terrible loneliness is a part of #ALS that often feels as difficult to deal with as the disease itself.

Eye gaze devices are very slow and I only say a few of my thoughts.

99% of my life is spent alone inside my head.

My wife left me after I became more disabled and now I see the pressure that my existence has on my family despite having nearly around-the-clock caregivers.

This video explains it well. Despite my best efforts, #ALS destroys everything you have in life.

I really don't want to die, but I wonder how much longer I can exist like this without having someone who loves & wants to take care of me until I die of the disease or treatment is found to bring hope for brighter days.

Sorry for the depressing post.

[Mike Quigley @RepMikeQuigley]

An ALS diagnosis is a death sentence -- I'm determined to change that.

Earlier this week, I brought together experts in the healthcare field to discuss the state of ALS today and what we must do to push for additional treatments and one day, a cure.

[Shah Minokadeh, M.D. @MinoShah]

The CORRUPT @US_FDA starting with Big Pharma shill @DrCaliff_FDA & Peter Marks of the @FDACBER have a tremendous amount of #ALS blood on their hands

There is NO ACCOUNTABILITY when they deny approval of an undeniably effective small biotech company ALS treatment called #Nurown, with unclear motives, through a sham Adcomm that was not interested in the Truth.
#NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal #YouCouldBeNext

Many testified of their unprecedented benefits on #Nurown in 100% PROGRESSIVE & rapidly FATAL disease since first identified in 1869.

Conveniently, the #FDA ignored world-renowned #ALS researchers like Doctors Bob Brown & Tony Windebank who have 600+ peer-reviewed studies & witnessed their patients respond to #Nurown.

Dr. Windebank of the @MayoClinic has 40+ years of experience treating people with #ALS. At the #NurOwn AdCom:

"While it is clear that not everyone responds to the treatment, there are clearly a significant number who do, and this response is new. I have clearly seen some people STABILIZE in a way that I have NEVER seen IN ANY OTHER TRIAL"

Shamelessly, the #FDA denied the request of people, with objective #RealWorldEvidence of #Nurown efficacy, to speak at the #Nurown Adcomm hearing.
#FDA leadership hides their corruption in scientific speak that the lay public, which includes CONGRESS, isn't able to fully understand or question.

Couple this with a largely apathetic CONGRESS that grants pictures with their dying #ALS constituents only to forget about them the second they are out the door.

I ask you, how will ALS ever end?
Will it take another 155 years?

Don't wait for HORRIFIC #ALS to enter your life to ACT.

@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @ChrisCoons @RepAndyHarrisMD @PattyMurray @SenatorDurbin @SenatorHassan @RepDonBacon @SenSanders @RepMMM @RogerMarshallMD @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @cathymcmorris @SenAmyKlobuchar @SenatorWicker @SenKevinCramer @JohnBoozman @SteveDaines @RepStephenLynch @RepMariaSalazar @RepJenniffer @RepPaulTonko @RepJohnJoyce @Congressman_JVD @RepChrisPappas @RepGusBilirakis @michaelcburgess @SenMarkey

[No More Excuses ALS Watchdogs! @als_now]

When a brain doctor gets a brain tumor he can experiment on himself using his own new therapy- and is celebrated. But when an #ALS/#MND PATIENT merely asks for a chance to try a (proven) safe and effective therapy that has undergone 3 @US_FDA clinical trials in 10 years- nope. We see how it works. And who paid, doc? #NurOwn #ENDALS @SkyNews https://t.co/pZugFaigIz

[Shah Minokadeh, M.D. @MinoShah]

I now have heard of two neurologists who actually founded the #ALS Centers in their academic institutions only to be diagnosed & die of ALS years later

Richard Olney, M.D. of UCSF & Arthur Hudson, M.D. of Western University

I ask that @AANmember retract the SHAMEFUL letter that was sent to the #FDA recommending against approval of intrathecal treatments for #ALS because they are "cumbersome."

As a physician who has done thousands of intrathecal injections & is now dying of ALS, I'm disgusted by the #AAN FALSE statement in the letter that:

"The complexity of administering intrathecal medications for #ALS can result in few institutions and physicians actually capable of administration."

As a physician who understands the condition and procedure the only conclusion I can come to is that the @AANmember took a position that puts some minor comforts of the physician and their staff ahead of advancing treatments for dying ALS patients.

I ask that a new letter be written & made public from the American Academy of Neurology to the #FDA showing your commitment to advancing ALL treatments for ALS.
Neurology as a specialty MUST commit to fighting for their dying ALS patients in the same way that Oncology does for their cancer patients.

I would appreciate a response to this message, @CarlayneJackson @nsanar @BrainMDmiyasaki @OrlyA @FlippenII @BenishSarah.

[Shah Minokadeh, M.D. @MinoShah]

More thoughts & prayers, but no action while ALL who are diagnosed with #ALS die.

If only ALS had aggressive leadership that would demand justice & humanity from the @FDACBER, @DrCaliff_FDA, & Congress.

Until that day, all #ALS patients & loved ones will receive are thoughts & prayers.
#NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal

@iamalsorg @andreaSgoodman @bsw5020 @sabrevaya

@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @senatorwicker @DrNealDunnFL2 @cathymcmorris @RepDebDingell @RepMMM @RepAnnieKuster @RepRobinKelly @RepBarragan @RepLoriTrahan @BernieSanders @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

[Shah Minokadeh, M.D. @MinoShah]

The undoubtedly bright, but CORRUPT @US_FDA starting at the top with Big Pharma shill @DrCaliff_FDA down to Peter Marks of the @FDACBER who both have a tremendous amount of #ALS blood on their hands

There is NO ACCOUNTABILITY when they deny approval of an undeniably effective small biotech company ALS treatment called #Nurown, with unclear motives, through a sham Adcomm that was not interested in the Truth.
#NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal #YouCouldBeNext

Many testified of their unprecedented benefits on #Nurown in 100% PROGRESSIVE & rapidly FATAL disease since first identified in 1869.

Conveniently, the #FDA ignored world-renowned #ALS researchers like Doctors Bob Brown & Tony Windebank who have 600+ peer-reviewed studies & witnessed their patients respond to #Nurown.

Dr. Windebank of the @MayoClinic has 40+ years of experience treating people with #ALS.
At the #NurOwn AdCom:
"While it is clear that not everyone responds to the treatment, there are clearly a significant number who do, and this response is new. I have clearly seen some people STABILIZE in a way that I have NEVER seen IN ANY OTHER TRIAL"

Shamelessly, the #FDA denied the request of people with objective #RealWorldEvidence of #Nurown efficacy.

The intelligence of #FDA leadership is not to the benefit of patients. It allows them to hide their corruption in scientific speak that the lay public, which includes CONGRESS, isn't able to fully understand or question.

Couple this with a largely apathetic CONGRESS that grants pictures with their dying #ALS constituents only to forget about them the second they are out the door.

I ask you, how will ALS ever end? Will it take another 150+ years?

Don't wait for HORRIFIC #ALS to enter your life to ACT.

@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun
@RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @ChrisCoons @RepAndyHarrisMD @PattyMurray @SenatorDurbin @SenatorHassan @RepDonBacon @SenSanders @RepMMM @RogerMarshallMD @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @cathymcmorris @SenAmyKlobuchar @SenatorWicker @SenKevinCramer @JohnBoozman @SteveDaines @RepStephenLynch @RepPaulTonko @RepJohnJoyce @Congressman_JVD @RepDavids @RepChrisPappas @RepGusBilirakis @neeratanden46 @michaelcburgess @SenMarkey

[Shah Minokadeh, M.D. @MinoShah]

.@US_FDA @FDACBER @DrCaliff_FDA… your CORRUPTION has left ALL who have ALS to die WITHOUT HOPE when you opposed approval of effective #Nurown.

Who will hold the #FDA accountable?

With broken bodies & NO BIG PHARMA ALLIES, dying #ALS NEED CONGRESS & the currently healthy public to fight on our behalf.

You or your loved one could be next.
#NurownWorks #CriticalUnmetNeed #CaliffIsCorrupt #100PercentFatal

As a fellow physician, I'm disgusted by FDA Commissioner CALIFF & #FDACBER Director Peter Marks who have abandoned their duty to patients & have become nothing more than Big Pharma shills.

The #FDACBER SHAM #Nurown AdComm hearing WASN'T set up to find the Truth.

MANY with UNPRECEDENTED #RealWorldEvidence were even DENIED an opportunity to speak

@katiecouric, the #ALS community lost the most effective treatment in its 154-year history FOREVER.
Please shine a light on the #FDACBER regulatory RIGIDITY for 100% FATAL #ALS that has left generations to die WITHOUT HOPE.

@SenatorBraun @lisamurkowski, what would you do if you or your loved one is denied a treatment that WORKS and is left only with the option of CERTAIN DEATH?

@RepAnnaEshoo, how is this CRUELTY allowed to go on for a disease WITH NO SURVIVORS since it was 1st identified in 1869?

You watched firsthand as your constituent, @JamieRoseBerryy, BEGGED for a chance to try NUROWN after witnessing the UNPRECEDENTED benefits in some.

Jamie was left to die WITHOUT HOPE denied safe & effective #Nurown.
This is the tragic reality that continues EVERY DAY for ALL with #ALS and our loved ones.

#ALS devastates EVERY DAY in EVERY COMMUNITY.

PLEASE don't allow this BLATANT #FDACBER CORRUPTION & longstanding prejudice for this small biotech company to result in a DEATH SENTENCE for generations.

@RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @SenatorWicker @RepCardenas @RepDebDingell @RepMMM @RepAnnieKuster @RepRobinKelly @RepBarragan @RepAngieCraig @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @chairmang @RepDonBacon

[Shah Minokadeh, M.D. @MinoShah]

I don't doubt that @ProjectALSorg intentions are generally good, but can you be honest & tell the #ALS community what treatment their donations will help get into #ALS bodies & how quickly this could happen?

Please take into account that:
-Prosetin now belongs to ProJenX
-The realistic time it takes to get a drug through the preclinical and clinical trial process
-Most ALS patients die within 2-3 years after diagnosis
-Dying patients & loved ones DESERVE to be told the truth. Many donate hoping that your work may benefit them when @ProjectALSorg knows it will not.

Look no further than Broadway star Rebecca Luker who openly spoke of her hope of receiving Prosetin during your reckless #Prosetin2020 fundraising campaign.

If people donate to benefit future generations, that's their right, but be honest with them.

This angers me a great deal.

@MGHNeurology Healey Center is the CLEAR choice testing MANY treatments NOW that can result in a breakthrough AT ANY TIME.

PLEASE Encourage fundraisers to give to HealeyHope:
https://t.co/VzQmMxQ0xd

Or support the growth of their Expanded Access Programs:
https://t.co/cEOMOfGuX5

The Healey Platform trial is now offering treatments in OVER 70 locations across the country, both providing access to MANY more patients & allowing MUCH FASTER enrollment/results for every treatment tested.
#GameChanger

Uniquely, their care staff is paid by @MGHneurology so 100% of donations go to research and treatments.

Let's stop accepting hopelessness for this generation of ALS patients.

PLEASE unite behind #HealeyHope.
#EndALS

@SlangsOnSports

[Sherry Quisenberry @sherryquis]

Is any focused research being gathered from families who have buried 20, 30 and more family members to ALS? Any focused research on those who progress very slowly and live years after diagnosis? @FDACBER #NurOwnWorks for some - let’s give it a go!

[Ajay Sampat, MD @Sampat_md]

Please review my letter to the @FDACBER and @DrCaliff_FDA in strong support of debamestrocel (“NurOwn”).

https://t.co/PBZMTX4IT8

@RepGuthrie @RepAnnaEshoo  @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @bsw5020

[Ajay Sampat, MD @Sampat_md]

"The fact that benefit was most notable in those early in their disease course is uniquely compelling rather than discouraging since earlier interventions have higher chances of modifying the disease course in many neurological diseases."

#NurownIsSafe #NurownWorks