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JeannieHeld2018 retweeted

almost 5 years ago

Thank you @NFL for supporting ALS with #MyCauseMyCleats! Help us #AxeALS by calling your Senators to sponsor #S1813 so people w/ ALS can get access to drugs stuck in clinical trials! Click this link, find your state, call your senator! https://t.co/hAPpBZDAXJ

stevens_nation's tweet photo. Thank you @NFL for supporting ALS with #MyCauseMyCleats!

Help us #AxeALS by calling your Senators to sponsor #S1813 so people w/ ALS can get access to drugs stuck in clinical trials!

Click this link, find your state, call your senator! https://t.co/hAPpBZDAXJ https://t.co/MXBu8rk5Nh

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JeannieHeld2018 retweeted

Senator Ted Cruz

@SenTedCruz

almost 5 years ago

Of course a failing Marxist regime like Nicaragua severed ties with free and democratic Taiwan in favor of better relations with the Chinese Communist Party. https://t.co/uIt4yBomFR

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JeannieHeld2018 retweeted

axeALSFoundation @stevens_nation

almost 5 years ago

Today’s passage of #ACTforALS in the House brings the 30k Americans living w/ #ALS 1 step closer to accessing promising treatments that could improve their quality of life. It’s time to fix the system for approving therapies for patients who are #DyingWaiting. Next up: The Senate

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JeannieHeld2018 retweeted

No More Excuses ALS Watchdogs!

@als_now

almost 5 years ago

What was that about "failure"? @fdacder @FDACDERDirector @US_FDA @FDACBER #Nurownworks #nurown #ALSTRUST #ENDALS @statnews #ALSA @AsociacionELAar @alsassociation @biospace @AlsPortugal @ELAperu @ALSMNDAlliance @mndassoc @BrainstormCell #CHOOSEWISELY NME

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Who to follow

BS

@bsteez55

JeannieHeld2018 retweeted

NFL

@NFL

almost 5 years ago

Through #MyCauseMyCleats, @Patriots DB @CodyDavis is supporting AxeALS & @stevens_nation to help raise awareness and funding for ALS treatment. Here's the story of why this cause means so much to Davis, in his own words. (THREAD, 1/5)

NFL's tweet photo. Through #MyCauseMyCleats, @Patriots DB @CodyDavis is supporting AxeALS & @stevens_nation to help raise awareness and funding for ALS treatment.

Here's the story of why this cause means so much to Davis, in his own words. (THREAD, 1/5) https://t.co/J0Ja2XjZyL

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JeannieHeld2018 retweeted

Sandy Morris @sandymorris333

about 5 years ago

.@biogen You have 2 trials-BIB100 (oral) & BIB105 (intrathecal) that don't have Open-Label Extension (OLE). Your participants are leaving your trials without the ability to continue taking your drugs. Shame on you. You're the giant in the ALS space, start acting like one. #PaCTD

sandymorris333's tweet photo. .@biogen You have 2 trials-BIB100 (oral) & BIB105 (intrathecal) that don't have Open-Label Extension (OLE). Your participants are leaving your trials without the ability to continue taking your drugs.
Shame on you.
You're the giant in the ALS space, start acting like one. #PaCTD https://t.co/H77bmDpXzD

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JeannieHeld2018 retweeted

axeALSFoundation @stevens_nation

about 5 years ago

@ScottGottliebMD My 31 year old husband was in the P3 #NurOwn trial & #EAP & stabilized both times. 2 yrs post diagnosis and he can still speak clearly, eat normally, & walk. He can get on the floor & play with our 7 mo old daughter. Now, he no longer has access to this treatment. #LivingProof

stevens_nation's tweet photo. @ScottGottliebMD My 31 year old husband was in the P3 #NurOwn trial & #EAP & stabilized both times. 2 yrs post diagnosis and he can still speak clearly, eat normally, & walk. He can get on the floor & play with our 7 mo old daughter. Now, he no longer has access to this treatment. #LivingProof https://t.co/lv03FLyhks

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JeannieHeld2018 retweeted

Scott Gottlieb, MD 🇺🇸

@ScottGottliebMD

about 5 years ago

Deeply tragic. Upshot here is we shouldn’t be randomizing patients to placebo when the outcome is certain death. We should use natural history models and synthetic control arms in these settings instead of obligating a placebo arm to a known, fatal outcome https://t.co/1C5qfV2wrv

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JeannieHeld2018 retweeted

Brian Wallach

@bsw5020

about 5 years ago

No more being told to go home and die. No more being told the therapies are 10 years We are in the room. Congress has heard us. Let’s f’ing do this.

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JeannieHeld2018 retweeted

Shah Minokadeh, M.D.

@MinoShah

over 5 years ago

Please encourage fundraisers, friends & family to donate to the clear leaders moving #ALS forward w urgency & ACTIONS: @MGHNeurology Healey Center for research/treatments. #PlatformTrial #EAP #HealeyHope https://t.co/6sNAFq4Z3s @iamalsorg for advocacy. https://t.co/0OqAdvcfDP

MinoShah's tweet photo. Please encourage fundraisers, friends & family to donate to the clear leaders moving #ALS forward w urgency & ACTIONS:

@MGHNeurology Healey Center for research/treatments. #PlatformTrial #EAP #HealeyHope
https://t.co/6sNAFq4Z3s

@iamalsorg for advocacy.
https://t.co/0OqAdvcfDP https://t.co/OnmGtf5zGH

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JeannieHeld2018 retweeted

axeALSFoundation @stevens_nation

over 5 years ago

Eric can still get down on the floor to play w/ our 5 mo old daughter. He gets up by himself using the couch for help. 2 years ago, doctors said he probably wouldn’t be here. Well, not only is he here—he’s singing, laughing & playing w/ our little girl. #LivingProof #NurOwnWorks

stevens_nation's tweet photo. Eric can still get down on the floor to play w/ our 5 mo old daughter. He gets up by himself using the couch for help. 2 years ago, doctors said he probably wouldn’t be here. Well, not only is he here—he’s singing, laughing & playing w/ our little girl. #LivingProof #NurOwnWorks https://t.co/6v6eflB1qK

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JeannieHeld2018 retweeted

axeALSFoundation @stevens_nation

over 5 years ago

Eric has fast progressing ALS. We are approaching 2 years since diagnosis (over 2 years since symptoms started in his hand). He can still tie a bow, peel open a Reese’s cup, turn pages in a book, use the TV remote, text, bathe, & eat a normal diet w/ a fork & spoon. #NurOwnWorks

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JeannieHeld2018 retweeted

Helene @Fightingforeric

over 5 years ago

Eric and Amanda Stevens Are Looking to Axe ALS | FOX Sports West https://t.co/UBCUKjGSyx via @YouTube

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JeannieHeld2018 retweeted

axeALSFoundation @stevens_nation

over 5 years ago

Please co-sponsor the #ACTforALS @RepBarragan! You supported this bill last session, and we are hopeful you will co-sponsor again. Eric was born and raised in San Pedro and we still live here today. We need your support and leadership for patients with ALS.

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JeannieHeld2018 retweeted

No More Excuses ALS Watchdogs!

@als_now

over 5 years ago

@TODAYshow

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JeannieHeld2018 retweeted

TODAY

@TODAYshow

over 5 years ago

Mom with aggressive ALS hopes to see sons graduate, asks drug company for help https://t.co/SbEcBAnlmT

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JeannieHeld2018 retweeted

BioSpace @biospace

over 5 years ago

NurOwn: A study in the complexity of ALS trials #clinicaltrials #therapeutics #ALS https://t.co/9RdJGif2vf

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JeannieHeld2018 retweeted

Wall Street Journal Opinion @WSJopinion

over 5 years ago

My husband and I fought for continued access to treatment and to improve an archaic regulatory pathway. He died waiting for change, writes Nicole Cimbura https://t.co/ZY6nG9KIFn

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