Becky Martz @becky_martz
I am on Twitter to gain information regarding ALS. I lost the best dad ever to this wretched disease and I carry the gene that caused his ALS. Pennsylvania, USA Joined August 2015-
Tweets228
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Followers439
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Following409
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Likes722
Just wanted to send a friendly reminder as you consider your end year donations that @iamalsorg was the only ALS nonprofit to actually fight for and secure $75 million in new funding to provide expanded access to people living with ALS now. The. Only.
Dear @US_FDA, Yesterday, 17 Americans passed away from ALS. To you, they are statistics. To the rest of the world, they are our friends and our family. One of those who left us yesterday was @sandymorris333. You know her because she met with you twice since 2019.
Exactly!!! 💯 It's none of my business!
Another important milestone on the road to treatments and cures! Huge thank you to the ALS champions in appropriations who helped make this happen: @KenCalvert, @BettyMcCollum04, @TomColeOK04, @RepMikeQuigley, @RepKayGranger and @rosadelauro!
This is the ALS Clock. Put it in your office and look at it often ALS is completely oblivious to the Human Clock It has no idea what a corporate quarterly system is. We're diagnosed/die every 75 minutes in the US & 4 minutes WW Work w/that kind of urgency-please #TurnstileofDeath
This is the ALS Clock. Put it in your office and look at it often ALS is completely oblivious to the Human Clock It has no idea what a corporate quarterly system is. We're diagnosed/die every 75 minutes in the US & 4 minutes WW Work w/that kind of urgency-please #TurnstileofDeath
I had a blast representing M1ST FCU at #Gettysburgpride2022
MAY is #ALSawareness Month But Awareness is not enough We are fighting: ▪️ for #DrugsInBodies ▪️ for quicker FDA approval of Drugs ▪️ to turn ALS from #Terminal2Treatable We PRAY for a cure But we FIGHT for people fighting for their lives today! @DrCaliff_FDA @POTUS @FLOTUS
This is my favorite couple! Thank you Brian and Sandra for all you have done, continue to do, and will do for those fighting this wretched disease!
This is my favorite couple! Thank you Brian and Sandra for all you have done, continue to do, and will do for those fighting this wretched disease!
If follow me could you please help by RT'ing this: If you are living with ALS, caring for (or love) someone with ALS or lost a loved one to ALS and I don’t follow you, let’s fix that. Drop a reply with your connection to the fight and I’ll follow you today. #together
Trying to get more people to follow me who aren't afraid to speak up in our fight for the rest of our lives. So if you follow me please retweet this with the #StrongerTogether and see how many followers I can get before the new year and I will follow you back.
If only @FDACBER would listen to Nobel Prize winner @ProfPCDoherty as it pertains to #NurOwn approval for #ALS. "Wait for the perfect solution & you will fail." #NurOwnWorks on some in this vastly heterogeneous disease. When it's your life, #SomeisEnough @SecBecerra @POTUS
If only @FDACBER would listen to Nobel Prize winner @ProfPCDoherty as it pertains to #NurOwn approval for #ALS. "Wait for the perfect solution & you will fail." #NurOwnWorks on some in this vastly heterogeneous disease. When it's your life, #SomeisEnough @SecBecerra @POTUS
I don't think I've ever posted something on Twitter that didn't have to do with ALS. I joined because of it. But, when I saw this, I literally read it ten times. I posted it on FB and it got ONE like. Racism hurts my ❤
This Saturday I turn 41. Honestly, I didn’t think I would be alive now when I was diagnosed with ALS in 2017. I have 1 birthday wish: to bring 4,100 new donors into the ALS fight to help end it. So, who is up for doing something amazing with me? iamals.org/happy-birthday…
There is no greater INHUMANITY than @US_FDA denying 100% fatal #ALS patients approval of #Nurown despite years of UNPRECEDENTED benefits. @FDACBER @DrWoodcockFDA @RepGuthrie @RepAnnaEshoo @FrankPallone @RepSchakowsky @RepJohnCurtis @JeffFortenberry @RepMikeQuigley @ChrisCoons
There is no greater INHUMANITY than @US_FDA denying 100% fatal #ALS patients approval of #Nurown despite years of UNPRECEDENTED benefits. @FDACBER @DrWoodcockFDA @RepGuthrie @RepAnnaEshoo @FrankPallone @RepSchakowsky @RepJohnCurtis @JeffFortenberry @RepMikeQuigley @ChrisCoons
@FDACDERDirector used regulatory flexibility when asking @AmylyxPharma to apply. We applaud this move & pALS ask @FDACBER leader Peter Marks and the #NurOwn review team led by Wilson Bryan do the same in asking @BrainstormCell to FILE NOW, and let the discourse begin. Why? This:
A moment not captured, minutes before we testified. In the panel with FDA, @janschakowsky advocated for patients to FDA so powerfully, @bsw5020 and I broke down. As I held Brian, I felt someone embrace us. It was @janschakowsky and the three of us held onto eachother and cried.
A moment not captured, minutes before we testified. In the panel with FDA, @janschakowsky advocated for patients to FDA so powerfully, @bsw5020 and I broke down. As I held Brian, I felt someone embrace us. It was @janschakowsky and the three of us held onto eachother and cried.
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
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.
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 908 Following Lisa Stockman Mauriello fought for Expanded Access to an ALS treatment. Lisa passed away 8.4.21. Honor Lisa’s legacy by advocating for change for ALS.
Sandra Abrevaya @sabrevaya
21K Followers 4K Following Wife to @bsw5020. Mama to spunky girls. Caregiver. CEO & Co-founder @synapticure. Co-founder @iamalsorg. Executive Producer @noc_film. All in on curing ALS.
Leanne Yacyshyn @leanne_yacyshyn
9K Followers 1K Following Wife. Mom of 2 teens. Former elementary school teacher. Canucks fan. Living with ALS and waiting for the day it is no longer terminal.
Sandra W. Marlowe @sandrawmarlowe
3K Followers 1K Following Married to the love of my life. Christ follower. Mom of five. Mimi to 14! Entrepreneur. Diagnosed with Bulbar ALS 3/30/2020. Fighting to live.
ALS TX DAD @AlsDads
2K Followers 894 Following USAF Vet, Father of 4, background in Healthcare Management and Disaster Response Management, ALS (pALS) Advocate (views & comments are my own)
ALS ACCESS @brainmatters10
2K Followers 2K Following Fighting for a cure for ALS/MND/ and it’s variants. Fighting daily for many years, for ALS drug access. Sod1 Gene carrier.
ALS Uncensored 🏴�.. @ScottsFight
2K Followers 1K Following Scott Craig. ALS Uncensored podcast. Digital Artist. AI Student. Typing with my eyes. Living Impossible! #ALSUncensored #ALS #EyeGazeArtist #AI
Mandi @RunningMama0522
2K Followers 1K Following
End ALS Now @EndALSNow
959 Followers 930 Following ▪Bri ▪I mainly amplify #ALS tweets ▪ALS=wretched, cruel, 100% fatal ▪RT=awareness, not agreement ▪🚫DMs🚫 ▪#EndALS ▪#SunflowerForSandy 🌻 ▪#RoseForJamie 🌹
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
SOD1 EndALS @CEHaddadNP
2K Followers 2K Following #ALS #fALS #SOD1 In the fight to save my family from ALS. Twin mom. Nurse practitioner. grieving daughter - 8/30/22 lost mom #33 in our family
alsHATER @HaterAls
1K Followers 967 Following als hater MM lover Impossible is an option One woman army
Nicole Cimbura @nicolecimbura
1K Followers 2K Following
Grant W Smith @GWSmith14
1K Followers 1K Following MUFC ! Proud Husband, Dad and GrandDad. Diagnosed with ALS in October 2020, I battle the BEAST everyday. #ENDALS #ALSLife
Ashlie @Ashlie259371
6 Followers 123 Following
DeepaK Kumar @Deepak13900
15 Followers 140 Following A Father & Husband..... symptoms onset since 2021 waiting for my Dx
Robert Fletcher @RobertF75183389
228 Followers 369 Following Marching on together to beat MND/ALS. Where did all those yesterday's go? Fighting MND and other irritating illnesses.
TeamJacobWV @TeamJacobWV
803 Followers 307 Following Jacob Harper, 24, diagnosed with ALS in March, 2022! Fighting for a cure through a clinical trial at Ohio State University! "Genetic FUS-Gene Mutation" (P525L)
Lisa crypto official @Margaretofficry
153 Followers 1K Following I'm Lisa from Britain am in financial growth institute, also a trader in binary/Bitcoin mining and other crypto currencies,
Deb Bellina @BellinaDeb
95 Followers 155 Following Lean Six Sigma Black Belt. Matt’s mom, advocating for people living with ALS today and people who will be diagnosed tomorrow, and the next day, and the next
Kathy @Kathy7483672148
104 Followers 433 Following Married to the love of my life who is dying from 100% Fatal ALS,mama, grandmama, full time caregiver. Counting everyday with my hubby as a blessing. #ALSsucks
Echo_Wisp @echo_wisp94902
27 Followers 2K Following
Şükrü Koçak @krKoak99101
41 Followers 197 Following
Henry hopper @henry_hopp11180
20 Followers 44 Following
Dr Marc Litt @DrMarcLitt1
620 Followers 728 Following Father | Husband | Former Osler Marine | Interventional Cardiologist|ALS affected physician|Lover of National Parks|Sometimes artist
Elena @birl133
2K Followers 907 Following A girl who loves to laugh has an open-minded and optimistic attitude.Designer, dream of traveling around the world, fitness,
McDusoo @MDusoo43025
99 Followers 1K Following I live alone now and enjoy business, traveling, shopping, food and music. I have a calm personality and I hope we can be friends.
Nesoset @nesoset6451
34 Followers 1K Following I live alone now and enjoy business, traveling, shopping, food and music. I have a calm personality and I hope we can be friends.
smith Juila @smith_juila88
743 Followers 5K Following
Chris Scandaglia @ChrisScandaglia
953 Followers 5K Following https://t.co/VTII0I4qsa President, in memory my grandfather where I have worked w AROD&CANO other NYY raised $10310 ALS widow, $4612 ALS widower & $2505 for ALS widow.
Godwaypharma @Godwaypharma07
19 Followers 472 Following Godwaypharma is a natural cure based on oriental regenerative therapeutic. It was restored by us after many thousands of years of being forgotten.
DD Frederick @af_chief1970
2K Followers 3K Following Retired AF CMSgt. Husband, Father, Brother. Traditional Catholic, Constitutional Conservative Trump supporter. Please,🚫 DM, 🚫Porn.
Amy Stiens @StiensAmy
74 Followers 197 Following Battling a Terminal Illness. ALS. Trying to spread awareness about this awful disease . A wife, mom of 3 amazing kids. I love watching @Bengals @Reds . ❤️
Kama Reed @kamareed1
37 Followers 601 Following Retired business owner with a new vision to help this country. Praying God makes a way
Bill P Fights @WilliamP_Sr
132 Followers 338 Following Love my family and God bless the USA 🦅. Whiskey on the rocks. In the fight of my life. I hate ALS!!!!
SlverQn @AmyG37314675
19 Followers 210 Following Prefer country over city life, old vs new, and would love to see a world that is not divided/controlled by greedy power hungry and bought politicians.
NURO CORP. @nuro_corp
685 Followers 3K Following One of the leading manufacturers of Neurotechnology.
MAC Angels @MACAngelsNY
423 Followers 394 Following MAC Angels Foundation supporting families w/ ALS.
Sandra SmithMND @SandraSmithmnd
3K Followers 4K Following Husband died MND/FTD. Public Adviser MND Dementia Palliative End of Life careHealth Equity ARCNWC was Sandra True Spontaneous coronary heart dissection survivor
Melissa Sweeney @MissyASweeney
47 Followers 1K Following
Andriy Dayvd @AndriyDayv64757
144 Followers 570 Following oil rig engineer, divorced,always live laugh and love cause i never loose faith&sight of the light& better days just around the corner
Michael Campbell @ObispoSouth
121 Followers 255 Following 'Life is What Happens To You While You're Busy Making Other Plans.' John Lennon #EndALS #Fight2EndALS
AnneeK @anneek10s
376 Followers 457 Following God is bigger than #ALS, dx in 2022, Married to the love of my life, Mom and Grammy, Golden retriever lover #bourbonlover #FightlikeAGirl #ALS #ALSWarrior
Betty’s Brigade Fou.. @No_More_ALS
345 Followers 530 Following We Are… the Betty’s Brigade Foundation ________ We Are… Fighting ALS Together _________________ - to raise ALS awareness & funding
Kaylei Lee @Kaylei0219
18 Followers 55 Following
Eileen Kelley @Eileen123Kelley
77 Followers 987 Following
Nader Al Ayaseh @NaderAlAyaseh
281 Followers 221 Following ALS warrior For my wife and all ALS patients
Tokyo_Tengu @Tokyo_Tengu
4K Followers 5K Following Happily married patriot grandpa, USN vet, and VFW Life Member. I'm on a life journey with ALS and learning to deal with it. Idiots are blocked without warning.
Ride to Vail, Your VI.. @RideToVail
409 Followers 1K Following Let Our Professional Drivers Assist You With Your Colorado Travel. Private Car Service & Limo Service, from and to Denver and Eagle Vail Airports. 970-455-4294
Sarah Parton (she/her.. @sarahkarpar
1K Followers 940 Following A very proud Mom and Gigi. Married to the love of my life. Living with #ALS C9orf72. GenX, liberal AF, rock and roll is boss. Football is my favorite season.
ALS ONE @alsone_official
947 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
Tony Keegan @drtonykee
860 Followers 4K Following
All is Well: Lessons @AllsWell333
617 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
Jackson @lifewithALS
1K Followers 699 Following Mum of 2 wonderful boys. 3 cats. Diagnosed August 2022 with ALS determined to fight and stay strong until a cure is found. Forever hopeful 🧡💙🧡💙
Liz text LOVE to 644-.. @makerisafer
3K Followers 3K Following Mom of 3 one with FUS-ALS P525L, RN BSN, art lover, @MomsDemand, hobby photographer, blood donor🩸 cyclist 🚴🏻♀️,#endals, grandma 💙 ♥️ #jacifusen #nurown
Anna Donna @AnnaDonna6886
13 Followers 430 Following ACCOUNT MANAGER 🎩 CRYPTO TRADING 📉💰💯 ASSISTANT'S ⛑️ MULTI MILLIONAIRES 💶💰💸 #BITCOIN
Just Highpathetically.. @larsondh1
857 Followers 1K Following I write on Political Theology, #MoralInjury, Rel & Sci. Bach, Rock, & Fiddich my Westie r wrad. #EndALS, it killed my wife. Here to read since am hardly read.
JabbaCocky @lkonowe
810 Followers 2K Following Science Addict, University Prof, Retired Forensic Profiler, Full-Time Atheist, living the good life in 🇳🇿 NZ. Everything coming out of my mind is mine #RESIST
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
I AM ALS @iamalsorg
26K Followers 799 Following I AM ALS is a patient-led movement revolutionizing how to end disease with our sights set squarely on ALS.
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.
Kelsie Snow @kelsieswrites
61K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 908 Following Lisa Stockman Mauriello fought for Expanded Access to an ALS treatment. Lisa passed away 8.4.21. Honor Lisa’s legacy by advocating for change for ALS.
Sandra Abrevaya @sabrevaya
21K Followers 4K Following Wife to @bsw5020. Mama to spunky girls. Caregiver. CEO & Co-founder @synapticure. Co-founder @iamalsorg. Executive Producer @noc_film. All in on curing ALS.
Sarah Nauser @SarahNauser
12K Followers 515 Following Dominating ALS one day at a time. “Love the life you live and live the life you love” Go Royals! #FightLikeAGirl
Leanne Yacyshyn @leanne_yacyshyn
9K Followers 1K Following Wife. Mom of 2 teens. Former elementary school teacher. Canucks fan. Living with ALS and waiting for the day it is no longer terminal.
Sandra W. Marlowe @sandrawmarlowe
3K Followers 1K Following Married to the love of my life. Christ follower. Mom of five. Mimi to 14! Entrepreneur. Diagnosed with Bulbar ALS 3/30/2020. Fighting to live.
ALS Advocacy @alsadvocacy
12K Followers 2K Following ALS = Lou Gehrig's Disease Thought it had been cured by now? Still no known cause. Still no cure. Still no treatment. Still quickly fatal. Still outrageous.
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.
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
ALS TX DAD @AlsDads
2K Followers 894 Following USAF Vet, Father of 4, background in Healthcare Management and Disaster Response Management, ALS (pALS) Advocate (views & comments are my own)
ALS ACCESS @brainmatters10
2K Followers 2K Following Fighting for a cure for ALS/MND/ and it’s variants. Fighting daily for many years, for ALS drug access. Sod1 Gene carrier.
Seth Poling @SethPoling10
5K Followers 392 Following Wild & Wonderful WV. FSU grad. Married to @erika_poling , Father to Liam & Bayler, ALS Warrior & advocate. #EndALS Founder of @project_seth
ALS Uncensored 🏴�.. @ScottsFight
2K Followers 1K Following Scott Craig. ALS Uncensored podcast. Digital Artist. AI Student. Typing with my eyes. Living Impossible! #ALSUncensored #ALS #EyeGazeArtist #AI
Mandi @RunningMama0522
2K Followers 1K Following
End ALS Now @EndALSNow
959 Followers 930 Following ▪Bri ▪I mainly amplify #ALS tweets ▪ALS=wretched, cruel, 100% fatal ▪RT=awareness, not agreement ▪🚫DMs🚫 ▪#EndALS ▪#SunflowerForSandy 🌻 ▪#RoseForJamie 🌹
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
Michelle Obama @MichelleObama
22.1M Followers 18 Following Girl from the South Side and former First Lady. Wife, mother, dog lover. Always hugger-in-chief. #TheLightWeCarry
Elena @birl133
2K Followers 907 Following A girl who loves to laugh has an open-minded and optimistic attitude.Designer, dream of traveling around the world, fitness,
kathy weiss✍🏻 @middlechildtake
1K Followers 3K Following Writer/marketer who knows we are more alike than we are different. I have a ❤️ for anyone touched by #ALS.
DeepaK Kumar @Deepak13900
15 Followers 140 Following A Father & Husband..... symptoms onset since 2021 waiting for my Dx
Robert Fletcher @RobertF75183389
228 Followers 369 Following Marching on together to beat MND/ALS. Where did all those yesterday's go? Fighting MND and other irritating illnesses.
TeamJacobWV @TeamJacobWV
803 Followers 307 Following Jacob Harper, 24, diagnosed with ALS in March, 2022! Fighting for a cure through a clinical trial at Ohio State University! "Genetic FUS-Gene Mutation" (P525L)
Tavares Speer @TavaresSpeer
428 Followers 185 Following Husband, Dog Dad, Former Business Analyst & FSU Alum. I was dx w/ #als 10/4/18. Still fighting. #alsfighter #alsawareness #Endals
Dr Marc Litt @DrMarcLitt1
620 Followers 728 Following Father | Husband | Former Osler Marine | Interventional Cardiologist|ALS affected physician|Lover of National Parks|Sometimes artist
PennLive.com @PennLive
155K Followers 893 Following A hub mixing what’s trending around the nation/world with Pennsylvania life and culture. Tips: [email protected].
Florida Gators Men’.. @GatorsMBK
126K Followers 681 Following National Champions ‘06 & ‘07 🏆🏆| Instagram: @GatorsMBK
Lauren L @LaurenL18641152
569 Followers 4K Following Proud Wife, Mother, Sister of ALS Warrior and PuppyMama. Stand with Ukraine. 🌻
Lee Morrison @LeeMorrison2022
373 Followers 887 Following Disabled, ALS fighter, power chair, USMC & Army Veteran, Book seller on AbeBooks @ https://t.co/pFVnC80NOW NO DM!!!!! You WILL be blocked!!
Donald Davis @atcyyc
897 Followers 595 Following Proud father of 2 children on the spectrum! Retired Air Traffic Controller, Pilot,Sailing,#endALS,#autism aware, #f*ck Cancer, #RA, #Chiara,Conservative
Gregory Erb, MD @GregErb5
313 Followers 357 Following MD, former D1 football player (KU Jayhawks), laid back yet passionate, on mission to improve lives and effectively treat/cure neurodegenerative disorders
Amber Salsberry @amber_salsberry
210 Followers 236 Following #hairstylist #salonowner #wrestlingmom #alshater #inthisfamilynoonefightsalone
BridgetRebecca @BridgetRebecca4
840 Followers 663 Following Momma bear 🐻 fighting for ALS treatments and a cure #Andrewsstrong
Steven Gallagher @SteveGMedia
4K Followers 1K Following Olivia’s dad. Family first. Niagara booster, healthcare communicator. Loyal Bills, Blue Jays and Sabres fan. als WARRIOR
Dawn @angeldawnpopp
239 Followers 155 Following
Troy Fields @Troy_W_Fields
677 Followers 238 Following Husband and father of 4 from PR #LIVINGwithALS in Tampa FL, Papi to 3 grandchildren and an ALS volunteer and advocate that bleeds USF green and gold.
JC @JC75408607
557 Followers 449 Following Diagnosed with ALS 3/30/22. Living life day by day while I try and process this journey.
nai @imonfiya7
407 Followers 41 Following A proud mom of 👭fighting ALS with my 28 year old daughter. #helpmybaby……I was able to lose 50 pounds and keep it off. I can help you too.💝
Nate Methot @a_life_derailed
2K Followers 777 Following Author of "A Life Derailed: My Journey with ALS", a memoir 39 y/o living with #ALS since 2011. #EndALS #empathy #awareness Memoir and blog at https://t.co/lSqWxLqUXm
Sarah Parton (she/her.. @sarahkarpar
1K Followers 940 Following A very proud Mom and Gigi. Married to the love of my life. Living with #ALS C9orf72. GenX, liberal AF, rock and roll is boss. Football is my favorite season.
MitoSense @MitoSenseInc
817 Followers 777 Following "Harnessing the Power of Mitochondria to Fight Disease" ™️ such as ALS, Alzheimer’s, and Parkinson’s.
Members 1st FCU @Members1stFCU
2K Followers 309 Following We're here to help our members thrive and better the communities we serve. #WeAreFaM1ly Federally insured by NCUA. Equal Housing Lender.
Sara DiGiglio @SaraDiGiggles
58 Followers 203 Following Mom. Wife. Daughter. Sister. Friend. Hate ALS, it killed my dad. Love people and politics. Fierce advocate and ally. #fuckals #ALSKilledMyDad #FDAHearings
Jessica Katz @JessicaKatz6
74 Followers 480 Following Fighting for a cure (though I'd even settle for treatment) for ALS in memory of my dad.
Cecilia Aguirre-Crow @Ceecicrow
34 Followers 96 Following ALS Warrior,fighting for expedited treatment
Auntie 𝓠 @AuntieQsews
668 Followers 2K Following Call me Quinn! ❀ A little bit of everything! ✁ Masks, Totes, Potholders, Aprons, Bibs and more! ♥ •Shipping US only• Familial ALS ~
Holley Broughton @holleybb
542 Followers 3K Following “You play the game in front of you.”-Nick Saban.#livingwithALS
Ashley Lee @AshL1225
92 Followers 388 Following
Mashkawizii @NISHwmn
702 Followers 2K Following Anishinaabe kwe, #ALSWarrior Advocate V4-2Stroke kickstarter at heart,Yogi, guzzler of Green Tea, 997 C4 summer shifter, living with ALS/C9orf72
bordyceps @bordyceps
52 Followers 61 Following
Sarah Rea (they/them) @sl_rea
114 Followers 260 Following Senior Research Fellow. Paget's Disease of Bone, MND/ALS, Frontotemporal Dementia, Autophagy, Cell signalling, Proteostasis. roller derby! views are my own.
Kathleen Siler @lakegirl1
421 Followers 2K Following Advocate for ALS awareness and agriculture. Volunteer for Washtenaw Farm Bureau and Active Against ALS, EMU alum Occupational Therapy. @ActiveALS @WashtenawCFB
Andrea Koval @jaxmadmom84
2K Followers 406 Following dereks widow :( , momma to 2 babes 2 angels raising ALS awareness and Retinitis pigmentosa awareness….
Scott Gingold @scottgingold80
192 Followers 1K Following Film enthusiast. Husband & father. Writer & Cartoonist. ALS advocate.
Andrew Heath-Richards.. @HeathRic1
1K Followers 3K Following Motor Neurone Disease/ALS campaigner, Mental Health Awareness Champion. Private Equity, Real Estate and Construction Industry Specialist. Tweets + views my own
Better Living With AL.. @BetterLivingALS
448 Followers 205 Following https://t.co/teo7cLIp7Y is a blog for those whose lives are touched by ALS. Upbeat posts provide practical advice on how to live joyfully with ALS.
Sometimes I Shake @shake_sometimes
244 Followers 466 Following feature-length documentary about life, death, love & jazz 🎥🎶 #endALS #parkinsons #sometimesishakemovie directed by @jared_cal, produced by People People Media
Randi Jacobs @Garagskis
1K Followers 554 Following Diagnosed with ALS in May 2022. Working on coming to terms with it.
Katie Couric @katiecouric
1.7M Followers 5K Following Journalist, @SU2C founder, podcaster, and co-founder of the eponymous Katie Couric Media. #1 New York Times bestselling author (Couldn’t resist)I am so excited that over the next few weeks, I get to share some incredible news with you. But not yet, sorry but not sorry to keep you waiting.
@becky_martz We got to watch my dad die in the most horrific way when he did not get approved for the nurown trials. I hope it gets approved so no one else has to watch that.
"I fantasize about getting it all back...I think of all the big things—where I’d work, where I’d live, how much money I’d have—and know none of it would matter in the least. I’d have everything I needed, just being whole again." #alifederailed #ALS amazon.com/Life-Derailed-…
Today is Rare Disease Day It’s been 6 years since I was diagnosed with ALS It’s been 5 years since I walked It’s been 3 years since I could breathe on my own It’s been 2 years since I could use my hands It’s been 0 days & counting since I have allowed this disease to beat me
today i met my bfs mom and sister they were soo nice had a great outting today.
For the record, @bsw5020 is almost completely paralyzed but he still runs circles around me strategically and intellectually - same as when I fell in love with him in 2008 ❤️
I should be used to this, but every time someone who knows me writes me off because of my disease progression, it still makes me mad and sad. Here’s to people not underestimating me. Good night moon.
My buddy tells me to keep fighting! @alsassociation @iamalsorg @synapticure @MGHNeurology
When you turn your phone on after a work trip red eye flight and see this ❤️❤️❤️
Last night I had a bedtime date with my daughters. We all piled into my bed and then my daughters took turns reading to me. After that, we turned off the lights and snuggled until they were nearly asleep. This was by far the best part of my day. Good night moon.
Losing your person is overwhelming in so many ways, not least of which is the amount of paperwork you need to do and track down when your brain is already struggling to function. Highly recommend doing these jobs with a puppy on your lap. Makes them much less awful. ❤️🥜
Good news, Swallow Study conducted today. No changes since the last one, 5 years ago. Not today ALS! I never expected to be excited about a swallow study, but here I am.
If you are one of those people that believe #NurOwn doesn’t work, you are effectively calling me a liar. Think about that for a minute. You probably should reevaluate who you are listening to. I would trust someone who knows firsthand what this therapy can do over anyone else.
Here’s to all of us for being alive for today!
this is such a classic santa photo! maddie is a classic mamas girl. she sat for a second and bolted took santa by surprise the person taken the photo to run to her mama! photo snapped this is gonna be a classic for all time
He came off the nitric this morning 🙌. He had a blood transfusion and it has made a world of a difference. Still on the vent but making such good progress to coming off.
As long as ALS is fatal, the community will attack each other and create division. This is one reason why I and so many others have fought so hard and still fight so hard to transform ALS to a chronic, livable disease. Here’s to that day coming as soon as possible.
This is us, 36 years ago today. BEST decision ever!!!
Enjoyed a special Halloween with our 2 grandsons. #blessed
My caregiver's son made this for me. I love the details... the wheels on the wheelchair and our leaf clothing lol. My favourite part is that we are holding hands.♥️
The view of my backyard that I have enjoyed the past few days!
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