Helene @Fightingforeric
#axeALS Joined October 2019-
Tweets5K
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Likes676
I urge @Senlaphonza to support #ALSVeterans and their families by cosponsoring and passing the Justice for ALS Veterans Act (H.R.3790/S.1590) bit.ly/JusticeforALSV… #ALSAdvocacy
As your constituent & someone impacted by #ALS, I urge @RepBarragan to increase #ALSResearch in the FY2024 budget: als.org/2024ALSResearc…
As your constituent & someone impacted by #ALS, I urge @SenAlexPadilla to increase #ALSResearch in the FY2024 budget: als.org/2024ALSResearc…
As your constituent & someone impacted by #ALS, I urge @SenFeinstein to increase #ALSResearch in the FY2024 budget: als.org/2024ALSResearc…
Eric is #DyingWaiting for the results of Type A meeting. @Cylebo @FDACBER will you let us share #RealWorldEvidence that #NurOwn halts paralysis & restores function?
Amanda Stevens Of axeALS Foundation On 5 Things You Need To Heal After a Dramatic Loss Or Life… by Authority Magazine link.medium.com/fbe2tKmLayb
Exciting news—we’ve partnered with MGH to establish a new #EAP program at UC Irvine! We have always advocated for the accessibility of new drugs & this new program will give many #ALS patients the access they’ve been waiting for. #axeALS massgeneral.org/neurology/als/…
Thank you @Forbes for covering our story and the work we are doing with #axeALS forbes.com/sites/stevenaq…
@stevens_nation @aVoice4ALS Yes, we know too #NurOwnWorks. We’re in this together, from our family to yours. Matt and Eric both improved and felt better. #SomeIsEnough
" I am not asking you to risk your life for me, like I did for others. I’m simply asking you not to stand in the way of me getting more of the drug that is helping me live." ~ Eric Stevens @stevens_nation Comment: regulations.gov/comment/FDA-20… #NurOwnNow #EndALS #ALS #NurOwnWorks
" I am not asking you to risk your life for me, like I did for others. I’m simply asking you not to stand in the way of me getting more of the drug that is helping me live." ~ Eric Stevens @stevens_nation Comment: regulations.gov/comment/FDA-20… #NurOwnNow #EndALS #ALS #NurOwnWorks https://t.co/jg96PSenvO
We’ve said it before & we will say it again. When we speak of Eric’s access to “experimental therapies” we are talking about #NurOwn. We name the drug but they don’t always put it in the article. NurOwn is the reason why Eric is still doing well. We won’t stop fighting for it.
Ok @Bengals fans. We’ve got a new competition / rivalry on our hands. @BuffaloBills fans found out @teehiggins5 has a charity and are donating to @stevens_nation #axeALS They really trying to beat us at fundraising for @HamlinIsland charity Chasing M’s Foundation. All ❤️
Tee Higgins's chosen charity was AXE ALS. #MyCleatsMyCause Keep praying for Higgins & Hamlin – nothing but respect for you both. 🙏🏽 ✅ axealsgolftournament.org ✅ gofundme.com/f/helping-tee-… @HamlinIsland | @teehiggins5 🐅 @adizlady #axeALS #RuleTheJungle #BillsMafia
I AM ALS friend Dan handed off the NurOwn petition -- and all 802 pages of signatures -- to Dr. Peter Marks at the FDA today. To everyone who signed and shared: THANK YOU. #NoAdCommNoVoice
Check us out on Caitlin Stamos' new and inspirational podcast, How Can I Help? #ALS @MayankNYC2LA @stevens_nation @sabrevaya @bsw5020 @iamalsorg @JohnStamos podcasts.apple.com/us/podcast/how…
An important video announcement from our brother @johndhopkins. Let’s #HopOnACure for ALS, together. Text HOP to 345-345 or visit hoponacure.org to make a donation and learn more. @HopOnACure
Eric had his 4th EAP dose of #NurOwn on April 8th. At clinic back in November, his breathing score was 74. Last week, it improved to 87. #NurOwnWorks #ClinicallyMeaningful #LivingProof
Just curious, for those who acted to pass #ACTforALS, did you act because you wanted to fund:
StampOutMND @StampOutMnd
317 Followers 1K Following Charity Fundraiser For The Motor Neurone Disease Association since 2015
iamthereseolsen @terricolsen
127 Followers 217 Following I will raise my voice until I can't. I was #Poisoned. Living with #ALS, #Ataxia #POTS #Dysautonomia #Fibromyalgia #ChemicalSensitivity. Connect the Dots.
All is Well: Lessons @AllsWell333
620 Followers 4K Following “All is Well: Life Lessons from a Preacher’s Father” by Kevin Martin Jr, a story of love and lessons from his dad. All profits to #ALS. #Deacon #CPA
AZ Latina ☮️🌊�.. @aVoice4ALS
4K Followers 5K Following Political Junkie. Advocate for Enviro Justice, Foster Care, Gun Safety, DEI, Amyloidosis, PD, ALS & Rare Diseases. Love LA Sports. I block disrespectful people.
Ann @Ann58032824
335 Followers 1K Following Septic Shock Survivor. Caregiver to mom with Vascular Dementia/ALZ 15+ years. ALS Advocate for sister & all pALS/cALS #DrugsInBodies #Hope #CURE
Minstants @MIGUEL_D_CH
36 Followers 475 Following
Farmstrong @farmstronginfo
1K Followers 4K Following Foodie, #wine-y, fan of good UX & #techcomm. Together we can save my husband & hundreds of thousands w/ #ALS. #EsriMaps #DyingWaiting #BLM #LGBTQIA #mirfanda
Unite Genomics @UniteGenomics
291 Followers 933 Following Unite is developing an all-in-one platform to bridge the gap between the rare disease community and researchers to accelerate the development of treatments and
wayne thomas @nwaynet
570 Followers 1K Following ALS Warrior! World Trvlr - 38 countries, Joanna.Foodie.Xmas.Fur kids:Callie & Skye. FCPHR, CMC, MBA, Sr. Leader. LIVING LIFE NOT WAITING TO DIE.🇨🇦🇺🇸🥂🍽
Sherry Quisenberry @sherryquis
2K Followers 1K Following A Kentuckian living in GA. Living with PLS/ALS and pissed that no access to real treatment exists. Love books, good jokes, my family and the changing seasons.
Darryl Borsato @BorsatoDarryl
1K Followers 1K Following ALS Fighter, proud husband and SOD-1 Mutant #FuckALS #WorldStrongestALSPatient ALS Action Canada board member / ALS Society of BC Advocacy Committee member
Dave Hagen @DaveHagen19
576 Followers 1K Following
alsHATER @HaterAls
1K Followers 965 Following als hater MM lover Impossible is an option One woman army
JERRY MAC HODGE @JERRYMACHODGE1
465 Followers 3K Following
Lorri Cavaliere @LorriCav
1K Followers 4K Following A mom in CT, fighting and advocating every day for the life of my 32-year old daughter, Alexandra, diagnosed with sporadic bulbar-onset ALS in July of 2020.
I’m Dying To Tell Y.. @LorrisPodcast
1K Followers 870 Following Midwest Momma & Wife. ALS Warrior for 20 years. Host of I’m Dying To Tell You Podcast. Living Faith Over Fear. Instagram: imdyingtotellyoupodcast
ALS CURE Project @alscureproject
689 Followers 511 Following The purpose of the ALS CURE Project is to provide laser focused leadership and sponsor scientific research leading to a cure for ALS (aka. Lou Gehrig’s Disease)
ALS ONE @alsone_official
954 Followers 633 Following Our world leaders in ALS research & care have united 2 advance critical research towards a cure while improving the qual of life of individuals living w/ALS now
Traci MacLean @traci_maclean
38 Followers 211 Following
biggMoe_effALS @biggMoe_effALS
576 Followers 496 Following NOT TODAY ALS.. NOT TODAY. brother diagnosed with ALS at 27. ADVOCATING&FIGHTING for all pALs
beanish 🐝 @bean_ish
328 Followers 1K Following ALS traveler ... Wife mom sister aunt friend neighbor activist legumist deltiologist... Team Pete forever #ENDALS #ALSAwarenessMonth #iamals
Susan Baker @KSalsFighter
1K Followers 3K Following KS farm girl passionate about promoting awareness about Familial FTD ALS
No More Excuses ALS W.. @als_now
4K Followers 1K Following ALS advocate fighting for transparency, access to effective therapies, and ensuring ALS patients aren't victims of weak drug pharma gouging. YT: ALSNewsNow
KICK ALS! ⚽ @RedCardALS
2K Followers 4K Following KICK ALS! = soccer/football fans, players, refs & coaches united to find a cure for Amyotrophic Lateral Sclerosis (aka Lou Gehrig's Disease, #ALS, #MND, #ELA).
blessed @DarlenaEmbry
86 Followers 163 Following The strongest people love unconditionally, forgive, and bring the light to those who are consumed by the dark.
Scott Smith @ScottFightsALS
9K Followers 497 Following Father, husband, gym owner, ALS warrior and storyteller. Founder of BodySmith and Flex On ALS. 💪
Amy Doornbos @doornbos_amy
38 Followers 5K Following ALS advocate, fighting for effective treatments for my pALS, my Dad, diagnosed with ALS in 2020.
Lianna lopez @Liannalopez8
20 Followers 753 Following
Michael Moutsoulas @MMoutsoulas
3K Followers 911 Following Husband. Dad of 3. US Navy Veteran. Studied Poli Sci. I have C9orf72 familial #ALS along with my sister. #NurOwn
Martín Blanco @martinbe1981
700 Followers 3K Following Scout/Agent CAA Stellar Sports. Uefa Pro Coach. Worked for CD Valladares 🇪🇸,Gran Peña FC🇪🇸Al Qadsia SC 🇰🇼,Laliga🇦🇪 ,Arsenal Soccer Schools 🇮🇳
Deane Gorsline @DeaneGorsline
361 Followers 964 Following Former 1CER Combat Diver and soldier @1CMBG_1GBMC - Husband to @Dani_petes - In the Fight Against ALS advocating for my brethren @ALSAction @ALSBurpee
Sadie @AlsSpouse
405 Followers 585 Following recently lost my beautiful husband after a brutal 2 year tornado called ALS. we need a cure, promising therapies, expanded access and a chance to survive.
Phil Green @pjgreen
3K Followers 1K Following Father to 4. Husband to 1. Right-brained.. 2x Rose Bowler. 1x Nat'l Champ. ALS Advocate. PLWALS. Type with my eyes.. #PurpleReign #NoWhiteFlags #NotTodayALS
Marta G.A @MartaGA88651995
246 Followers 961 Following
Diane Gaglio @DianeGaglio44
220 Followers 155 Following I am a wife, mother, recent Gigi, sister, and ALS advocate for my brother, Matt
Jesus Diaz @EdTechJesus
102 Followers 299 Following Care about people. Care about your work. Laugh hard. Never go halfway. Never stop learning.
Lisa Pecoraro Deegan @LMDeegan
810 Followers 731 Following Mom | ALS Advocate: Podcast Host, Co-Founder, Community Builder. Phase3
David Pozo, Cell & Mo.. @DavidPozo_LAB
245 Followers 345 Following Professor of Biochemistry & Molecular Biology, Univ Seville Medical School. Group Leader @CABIMER. #ALS. #ELA. #FTD. #MND. @CRS_FG_Immuno
Amy Doornbos @doornbos_amy
38 Followers 5K Following ALS advocate, fighting for effective treatments for my pALS, my Dad, diagnosed with ALS in 2020.
Mark Warner @MarkWarner
495K Followers 22K Following U.S. Senator from Virginia. Chairman, Senate Intel Committee.
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Tim Kaine @timkaine
938K Followers 779 Following Anne Holton’s husband, Dad of 3, Stone Irish, public servant, musician, civil rights lawyer, backpacker. Text (804) 587-7004 to join our campaign.
Marco LOL @SenatorRubioLOL
60 Followers 0 Following
Rick Scott @SenRickScott
457K Followers 1K Following Florida's U.S. Senator. Fighting for Florida families and to Make Washington Work. #LetsGetToWork https://t.co/O6Ra1UNW96
Tim Scott @SenatorTimScott
773K Followers 4K Following Just a South Carolinian living his mama’s American Dream. Ranking Member of @BankingGOP
Lindsey Graham @LindseyGrahamSC
2.2M Followers 2K Following The official Twitter feed for United States Senator Lindsey Graham.
U.S. Senator Cindy Hy.. @SenHydeSmith
29K Followers 676 Following Office of U.S. Senator Cindy Hyde-Smith (R-Miss.).
Senator Roger Wicker @SenatorWicker
115K Followers 713 Following Senior U.S. Senator for Mississippi. Ranking Member @SASCGOP. Please visit my website for updates.
Senator Mike Crapo @MikeCrapo
131K Followers 773 Following United States Senator for the great state of Idaho.
Senator Ben Sasse @SenSasse
162K Followers 1 Following The press office account of U.S. Sen. Sasse. His (less political/hopefully more interesting) personal account is @ BenSasse.
Senator Ted Cruz @SenTedCruz
3.6M Followers 5K Following Representing the State of Texas in the United States Senate.
Senator John Cornyn @JohnCornyn
376K Followers 13K Following Mainly news I find interesting, pics, and opinions. Honored to represent the great state of Texas in the US Senate. RTs =/= endorsements
Senator John Hickenlo.. @SenatorHick
39K Followers 401 Following Proudly serving the people of Colorado in the U.S. Senate.
John Hickenlooper @Hickenlooper
192K Followers 704 Following Former geologist, brewer, mayor, and governor. Occasional banjo player. Ready to bring change to Washington & get things done for Colorado!
Ron Wyden @RonWyden
504K Followers 627 Following U.S. Senator from Oregon. @SenateFinance Chairman. @WydenPress. Instagram: https://t.co/F6XmPU61WA. He/him.
Jesus Diaz @EdTechJesus
102 Followers 299 Following Care about people. Care about your work. Laugh hard. Never go halfway. Never stop learning.
Senator Alex Padilla @SenAlexPadilla
70K Followers 370 Following U.S. Senator for California. Devoted husband and proud dad. Dodgers diehard. EngiNERD.
Dave Hagen @DaveHagen19
576 Followers 1K Following
Moonbeam Ninja @MoonbeamNinja
518 Followers 2K Following While we research for a cure, let's approve #NurOwn, T-regs and Cu-tsum for ALS patients.
minna @minnadillard
961 Followers 3K Following 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.
Joe Eason @joe_batman820
165 Followers 886 Following #darkknightfightsals #nurown treatment NOW! #darkknightfightsals retired by ALS September 2019 https://t.co/pFqHveZZVT
muzza gee @GeeMuzza
66 Followers 140 Following Husband, father, son, brother, uncle, friend - battling MND since 2017. Never give up, always have hope!
Jodi O'Donnell-Ames @jodonnellames
396 Followers 667 Following mother. author. entrepreneur. founder. advocate. speaker. big heart, open book. coffee fanatic. opinions my own. #justgettingstarted
Lara Garey @tomstroops
381 Followers 369 Following Mom, Wife, Caregiver and now Widow b/c of ALS. 2019 Elizabeth Dole Fellow from Texas. ALS and Veteran Advocate. #tomstroops
ELA ALS Precisa De Am.. @ElaAmigos
257 Followers 556 Following Pretendemos que acelerem os processos relacionados com os tratamentos disponíveis para o tratamento da ELA - Esclerose Lateral Amiotrófica: Nurown cuATSM TREGS
Shelly Goettl @GoettlShelly
91 Followers 157 Following
Nita Aldridge @Sweetpea4853
71 Followers 454 Following
Stem cell Strides @StemCellStrides
52 Followers 138 Following Inspiring patient and caregiver stories and promising breakthroughs. Submit your story at [email protected].
Mary @MaryCouch1960
125 Followers 123 Following
Wildcat4151 @wildcat4151
470 Followers 2K Following I'm a wife & mother, Navy Veteran, ALS Advocate, Writer, Cook and Warrior. Diagnosed January 2015. Former Miss Wheelchair New Mexico. Holy Walkamolies Captain.
Ze Ji @ZeJi07626937
261 Followers 469 Following
Deborah Midgley @DeborahMidgley1
227 Followers 194 Following
Nicole McCabe @NicoleALSJurney
2K Followers 650 Following 35 year old PNW girl battling #ALS I'm here to fight with all my might. My babies need me! We deserve a right to live. 💙 join me in my battle
Alexis VonBergen @AlexisVonbergen
215 Followers 205 Following ALS LIVES MATTER I am a huge San Francisco Giants fan and a lover of all things baseball. In fact Lou Gehrig and I have something in common..ALS!
@ALSEUROPE @ALSEUROPE1
500 Followers 2K Following
JamieRoseBerryy @JamieRoseBerryy
1K Followers 1K Following Fierce Freespirit fighting for ALS freedom & ALS rights "We’re simply asking for a fighting chance to live the lives that we were meant to live" #ALSLivesMatter
mustafa javed @mustafajaved91
23 Followers 42 Following
Mayuri Saxena @Mayuri_Saxena
9K Followers 607 Following 39yo living with ALS on Life support. Author. Creative Director. Advocate. Dreamer. Public Servant. ALSFRS 1/48 https://t.co/vibJSKdIl4
Robert Luongo ALS Fun.. @wefightals
320 Followers 926 Following Our Mission: To alleviate the financial burden of individuals and their families that have been victimized by ALS including assistance and research.
Mad de Carvalho @carvalho_mad
95 Followers 411 Following
Elizk @Elizk84179966
218 Followers 906 FollowingEric is #DyingWaiting for the results of Type A meeting. @Cylebo @FDACBER will you let us share #RealWorldEvidence that #NurOwn halts paralysis & restores function?
Amanda Stevens Of axeALS Foundation On 5 Things You Need To Heal After a Dramatic Loss Or Life… by Authority Magazine link.medium.com/fbe2tKmLayb
" I am not asking you to risk your life for me, like I did for others. I’m simply asking you not to stand in the way of me getting more of the drug that is helping me live." ~ Eric Stevens @stevens_nation Comment: regulations.gov/comment/FDA-20… #NurOwnNow #EndALS #ALS #NurOwnWorks
We’ve said it before & we will say it again. When we speak of Eric’s access to “experimental therapies” we are talking about #NurOwn. We name the drug but they don’t always put it in the article. NurOwn is the reason why Eric is still doing well. We won’t stop fighting for it.
@bsw5020 A precious memory that no amount of disease can take from you. Lifting you up in prayer, Brian, along with all those fighting ALS.
This video is from April 2017, the month my hand started to cramp. I knew how special that moment was then. But it is even more special now.
We’ve said it before & we will say it again. When we speak of Eric’s access to “experimental therapies” we are talking about #NurOwn. We name the drug but they don’t always put it in the article. NurOwn is the reason why Eric is still doing well. We won’t stop fighting for it.
Made it! 42!!! And while ALS has changed a lot, I still think I look pretty darn good.🥳
I have been a faculty at Northwestern for the past 14 years! Beginning of September 1st, I will celebrate being alive and kicking at Northwestern Medicine for the past 14 years! Who is going to congratulate me and celebrate with me?
We know #NurOwn is the reason Eric is still playing with his little girl. We are thrilled to hear the news that @BrainstormCell is filing the BLA. We are hopeful @US_FDA will exercise its regulatory flexibility when considering approval of this treatment. All pALS deserve access!
My Nurown procedure was on Thurs & I'm gratefully sore. It was my 25th LP (counting BMAs) & once again my incredible LP crew outdid themselves. My favorite music was on, hot coffee afterwards & 1 of the nurses told me & Justin we change the energy in the room w/our love & humor.
Shave: check Haircut: check Huge smile: check Stylish clothes: check Awesome wheelchair: check If I can brag for a second, I am looking damn good for a guy five years into ALS. Rock your Saturday all.
An important video announcement from our brother @johndhopkins. Let’s #HopOnACure for ALS, together. Text HOP to 345-345 or visit hoponacure.org to make a donation and learn more. @HopOnACure
Eric had his 4th EAP dose of #NurOwn on April 8th. At clinic back in November, his breathing score was 74. Last week, it improved to 87. #NurOwnWorks #ClinicallyMeaningful #LivingProof
Bureaucratic red tape is killing people living with #ALS. Congress MUST hold #ALShearings to make @US_FDA accountable NOW. #NoMoreDead @DrWoodcockFDA @SecBecerra @RepMikeQuigley @PattyMurray @SenatorBurr @FrankPallone @cathymcmorris @RepAnnaEshoo @brettguthrie @rosadelauro
@statnews Thank you @statnews! My husband was in the P3 #NurOwn trial & his progression significantly slowed. He is still walking, talking, eating, & holding our daughter. He NEEDS to continue this treatment and all patients deserve access! #NurOwnWorks #LivingProof
#NUROWNWorks -Congress MUST tell @FDACBER to APPROVE SAFE/EFFECTIVE #NUROWN NOW! #EndALS @RepAnnaEshoo @cathymcmorris @rosadelauro @ChrisCoons @SenJohnThune @RepMullin @SenatorDurbin @SenWarren @SecBecerra @PattyMurray @SenatorBraun @RepMikeQuigley @brettguthrie @RepJohnCurtis
This beautiful little girl needs her Dad. She knows #NurOwnWorks. How? After 6 doses of #NurOwn, this "fast progressor" can still push her stroller, play on the floor with her, read her a book, go trick or treating, bathe her w his onset hand. #LivingProof #MND @RepSchakowsky
I’m… I’m just speechless right now. No words. Just tears of joy. #ACTforALS
BREAKING: ACT for ALS just passed in the Senate. The bill is on it's way to POTUS! 🎉🎉🎉 It's an incredible day for the ALS community! Thank you to all of the advocates who worked tirelessly to get this bill passed. Change is coming! 🙏🙏 🙏@bsw5020 @sabrevaya @Michell62614519
THIS JUST IN: #ACTFORALS just passed in the Senate! Next stop: @POTUS. Such phenomenal news and what teamwork is all about because it sure did take the team of the entire amazing community at large to get that done! Great work, great hope! #EndALS
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