Mama of children & cats. A slightly different cup of tea. She/her/weirdo.
Idaho, USA
Joined February 2015
- Tweets14.1K
- Following413
- Followers498
- Likes209K
StuffedwithAloha retweeted
💐🌺Need lei this weekend? I gotchu.
Lei sale fundraiser in Waikele! Details below 🤙🏽
StuffedwithAloha retweeted
Boise River conditions remain too dangerous to float ktvb.com/article/news/local/…
StuffedwithAloha retweeted
The world has suddenly become a sadder place to live in with the passing of Norman Lear. He was a great positive force in the entertainment industry, & more importantly to me personally he was a good friend. We are so lucky to have his remarkable body of work to remember him by.
StuffedwithAloha retweeted
3 December 1918 | A Czech Jewish woman, Marie Löwyová, was born in Prague.
She was deported to #Auschwitz from #Theresienstadt ghetto on 6 September 1943. She did not survive.
StuffedwithAloha retweeted
Does anyone really believe that #ALS advocacy is adequate?
It's terrible & a costly failure for the ALS community NOW & the future diagnosed.
StuffedwithAloha retweeted
24 November 1939 | A Dutch Jewish boy, Alex Weijel, was born in Enschede.
In October 1942 he was deported to #Auschwitz and murdered in a gas chamber after the selection.
StuffedwithAloha retweeted
Stephanie lived long enough to see the @FDACBER & @DrCaliff_FDA rob the #ALS community of any hope of survival.
#NurownWorks #FDAfailedALS #100PercentFATAL
obituaries.salemnews.com/obi…
@RepAnnaEshoo, I don't know how CONGRESS & society, in general, allow @US_FDA CORRUPTION to go on for HORRIFIC #ALS despite it being 100% FATAL since 1869 & being a military service-related disease.
@RepDonBacon, 1 of every 6 who die of #ALS are veterans.
Why do Peter Marks & Dr. Califf get to enjoy Thanksgiving with their families after they sentence ALS patients to death without hope?
@RepGuthrie @RepLarryBucshon @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepCardenas @RepDebDingell @RepMMM @RepAnnieKuster @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @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
My sister Steph showing off her favorite blanket. How many points is the ability to smile worth on the ALSFRS-R, @DrCaliff_FDA? Steph first begged to try #NurOwn 3 years ago when she was still able hug & kiss her nieces & nephew. #ALS is relentless! @US_FDA @BrainstormCell 🙏
StuffedwithAloha retweeted
#ALS has gone from a community filled with HOPE for effective #Nurown approval, back to a passive community accepting CERTAIN DEATH & "thoughts & prayers" while we ALL die
@AdyBarkan, @sandrawmarlowe, JR Watts are only very few of the #ALS deaths since the @FDACBER @DrCaliff_FDA decision to continue the CRUEL regulatory RIGIDITY for 100% FATAL #ALS.
#NurownWorks #FDAfailedALS #100PercentFATAL #BloodOnYourHands Peter Marks & Dr. Califf.
The #ALS community has gone silent.
CONGRESS & the @US_FDA have forgotten about #Nurown and the fate of ALL who are dying of HORRIFIC #ALS.
The only question is, unless the ALS community & advocacy groups fight the CORRUPT #FDACBER on #Nurown, ... WHO WILL DIE NEXT?
@iamalsorg
@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @SenatorWicker @RepCardenas @RepDebDingell @RepMMM @RepRobinKelly @RepBarragan @RepAngieCraig @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @chairmang @RepDonBacon
StuffedwithAloha retweeted
The Elizabeth Dole Home Care Act is an important piece of legislation that, if passed, would increase access to home and community-based care services for Veterans with medical needs like ALS. Support this bill by contacting your elected officials: iamals.org/action/elizabeth-…
StuffedwithAloha retweeted
.@RepJasonCrow, please contact @RepMikeQuigley or @chairmang to cosponsor the bipartisan #PromisingPathwayAct, H.R.4408.
The existing FDA pathways, such as the Accelerated Approval pathway, are ill-suited for 100% fatal ALS that lacks a validated accepted biomarker.
This bill would allow a time-limited provisional approval with the same standards of safety & efficacy (without a biomarker) that the FDA must renew every 2 years.
This isn't a partisan issue. 154 years of hopelessness for 100% rapidly fatal #ALS MUST END.
@RepBrianFitz @RepTerriSewell @TeamCalvert @SenatorBraun @SenGillibrand
ALS is a terrible disease, and servicemembers and veterans are disproportionately affected.
Led a successful bipartisan effort with @chairmang to fund the CDC's research into the links between ALS and our military as we strive towards a cure. crow.house.gov/media/press-r…
StuffedwithAloha retweeted
.@andreas_forslan, can you please help my dear friend Kristin?
We were in touch with you months ago. This is very important and time-sensitive as Kristin is completely locked in. Can you imagine if you were?
Can you please arrange for her to try your @Cognixion_AI One device asap to see if it works for her?
@ashleycoffey_ @ZubyOnwuta @jennylayfluffy @lukeslp @UsabilityFox @BCurtisDavidson @timstutts @XRAccess, do any of you have information on Nuro.World or can give any information on what can help my friend Kristin who has lost even her eye movement because of ALS?
StuffedwithAloha retweeted
.@Unbabel @justvasco, can you please help my dear friend Kristin? #ALS #ProjectHalo
This is very important and time-sensitive as Kristin is completely locked in. #ALS has even taken her ability to move her eyes.
decrypt.co/206004/mind-readi…
@SteveGleason
StuffedwithAloha retweeted
Looking at an external brain communication device for (locked-in) Kristin. Do any PLWALS or cALS have experience with Nuro.world & a device called Nuos Extreme 2? @iamalsorg @alsassociation @MinoSean @VPResearch_ALS @als @SteveGleason #ALS
StuffedwithAloha retweeted
.@Unbabel @justvasco, can you please help my dear friend Kristin? #ALS #ProjectHalo
This is very important and time-sensitive as Kristin is completely locked in. #ALS has even taken her ability to move her eyes.
decrypt.co/206004/mind-readi…
Looking at an external brain communication device for (locked-in) Kristin. Do any PLWALS or cALS have experience with Nuro.world & a device called Nuos Extreme 2? @iamalsorg @alsassociation @MinoSean @VPResearch_ALS @als @SteveGleason #ALS
StuffedwithAloha retweeted
BENEFIT Act of 2023 iamals.org/action/benefit-ac…
StuffedwithAloha retweeted
I hope that I'm not the only person emailing.
FDA Commissioner Califf & Director of the #FDACBER Peter Marks' (responsible for the sham #Nurown AdComm hearing) direct email addresses are:
[email protected],
[email protected],
[email protected]
CONGRESS, this is the darkest time in the 154-year #ALS history.
The @FDACBER has killed effective #Nurown sentencing ALL with #ALS to die WITHOUT HOPE.
#FDACBER CORRUPTION & marginalization of 100% PROGRESSIVE & FATAL #ALS has been sickening to watch under the leadership of Peter Marks.
@DrCaliff_FDA allowed this to continue as FDA Commissioner.
Many generations of #ALS patients now have met with & believed #FDACBER Director Dr. Peter Marks' LIES & assurances of regulatory flexibility for 100% fatal ALS.
Dr. Marks' has filled cemeteries with #ALS patients & is now going to fill many more.
BOTH OF THESE FDA OFFICIALS HAVE ALS PATIENTS' BLOOD ON THEIR HANDS.
The vast majority of patients diagnosed today will not survive to see the results of the planned #Nurown Phase 3b trial.
Tens of 1000s have died in the fight for #Nurown & tens of 1000s more now will continue to die WITHOUT HOPE.
#NurownWorks #NurownIsSafe #CriticalUnmetNeed
All of this HORRIFIC suffering & family devastation will occur while an UNDENIABLY effective treatment exists.
CONGRESS, how do you allow this to go on?
CONGRESS, dying #ALS, with broken bodies & no Big Pharma allies, NEED YOU to advocate on our behalf.
#ALS devastates EVERY DAY in EVERY COMMUNITY.
ALS IS NOT RARE & is rapidly becoming more common.
154 years after the first reported #ALS diagnosis, it's still 100% PROGRESSIVE & FATAL today.
MARK MY WORDS. #ALS will directly or indirectly enter many of your lives in the future.
Don't wait for ALS to enter your life to ACT.
@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @SenatorWicker @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepMMM @RepAnnieKuster @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @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
StuffedwithAloha retweeted
I have no doubt that @DrCaliff_FDA & Peter Marks of the @FDACBER have already completely forgotten about 100% FATAL #ALS after denying Accelerated Approval of effective #NUROWN.
#FDAfailedALS
The #ALS community has gone back to its EXTREME suffering & endless deaths / devastation.
Families are walking into neurologist offices today… 154 years after the first documented ALS case… and are walking out with a DEATH SENTENCE.
How is this allowed to go on?
@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 @RepDavids @RepChrisPappas @RepGusBilirakis @neeratanden46 @michaelcburgess @SenMarkey
