Christy A. @momwithwheels
I am wife and mom of 2. Doing my best as a mom with Lou Gerhigs disease (ALS). SF Bay Area Joined September 2010-
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Make this the next project runway challenge #als #wheelchairfashion #fashion #adaptablefashion #adaptiveclothing @Walmart @ProjectRunway
This is the moment that we first found out about the amazing grant from Mackenzie Scott and her incredible foundation. I am so proud of the amazing IAA staff and community. As you will see, disbelief turns into happy tears. Today, I cannot stop smiling.
I AM ALS is humbled to have been selected as an awardee of Mackenzie Scott’s #YieldGivingOpenCall. We were gifted an incredible $2 million – the largest single gift in I AM ALS’ history! Read the full press release: iamals.org/updates/i-am-a… (1/3)
Holy f'ing sh*t! This is a big deal! Thank you to Mackenzie Scott and her amazing foundation for lifting up ALS and @iamalsorg. Thank you, thank you, thank you!
Holy f'ing sh*t! This is a big deal! Thank you to Mackenzie Scott and her amazing foundation for lifting up ALS and @iamalsorg. Thank you, thank you, thank you!
If you read about a failed drug trial please get that this is what that news feels like to families dying from these diseases. We are the faces of grief and suffering behind those headlines.
ALS is an expensive disease that isn’t as rare as some think. I appreciate the focus on solving the ALS mystery & finding effective therapies, but there’s too much invested on CURES & not nearly enough on everyday CARE support for PLWALS. The current imbalance is unacceptable!
Yesterday, rare and progressive disease advocates, patients, and families came together to support the Promising Pathway Act. Patients need access to treatment now. They don’t have time to wait. Contact your Senators and Representatives to support the #PromisingPathwayAct!
Hey @elonmusk #Neuralink + #VisionPro. Make it happen for #ALS patients.
Hey @Walmart I bought a bed frame from you that was supposed to be delivered yesterday but now it’s delayed & most likely lost in transit. It is a time sensitive delivery for me. Your customer service is not helpful, giving me different excuses but not making it right. Ugh!
Bari Weiss A lot of people have shared this online … Skip to her speaking and it’s probably 40 minutes long. One of the most important speeches I’ve ever heard…ja Barbara K. Olson Memorial Lecture [NLC 2023] youtube.com/live/1V-kyy2zo… via @YouTube
I’m so very tired of all the sanctimonious and cruel “experts” deciding what risks are acceptable for a terminally ill community. The utter lack of perspective and the sheer lack of respect for patient autonomy is pervasive and infuriating.
Greg + @biospace. Stop saying there are "more than half a dozen therapies [for ALS.]. There are FOUR. It's noted all the time- including again during the #NurOwn AdCom. Aspirin is for headaches and we don't count oral reformulations as different drugs! biospace.com/article/path-f…
Why is it that the US government through its agency @FDACBER can say that my son can get a prescription from his doctor for assisted suicide, but he can't get access to #NurOwn that has shown in trials and EAP to slow, stop, or reverse progression of #ALS? @DrCaliff_FDA
Look at what the Bioethicist said, and look at what a patients mover said. A little clue: The Mom is CORRECT. This is absolutely horrible. The adcom yesterday, seemed like a infomercial to chastise the company, the 2,000 heartfelt letters all but ignored, and the patient…
I will leave you with this. Israeli patients treated with Nurown. 2012 out of 12 patients 9 are still alive. Think about that tonight. And the Multiple Sclerosis trial had Clinically significant benefit. The US FDA panel voted 17-1 against approval tonight. Some stated that…
The @US_FDA adcom decision and process today looked fully like a preconceived outcome, despite record # of letterr, support signatures, and beyond sufficient firsthand testimony that NurOwn works for many. I continue in my disgust with the FDA, but inspired by PWALS courage.
The @US_FDA adcom decision and process today looked fully like a preconceived outcome, despite record # of letterr, support signatures, and beyond sufficient firsthand testimony that NurOwn works for many. I continue in my disgust with the FDA, but inspired by PWALS courage.
I've always advocated for much more aggressive and loud advocacy. I'm sick of empty words by people who say that they are "moved" by patient testimonies or "their heart bleeds" for the ALS community, but they will not understand the devastation unless it affects them. Does…
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.
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.
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
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.
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.
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.
Shah Minokadeh, M.D. @MinoShah
4K Followers 730 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal ALS
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.
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)
Stew @jonstew1982
2K Followers 193 Following Living with ALS, “If you’re not part of the solution then you are the problem.” Love my wife & kids more than ANYTHING!
Mandi @RunningMama0522
2K Followers 1K Following
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
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 909 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.
Christine Gilmore RN @KickenALSAss
2K Followers 2K Following ALS Bad-Ass. Registered Nurse. MHA . Married. ♿️. DM Scammers will be reported.
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
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
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
Shawtroo @Shawtroo171935
0 Followers 17 Following
DeepaK Kumar @Deepak13900
15 Followers 141 Following A Father & Husband..... symptoms onset since 2021 waiting for my Dx
Seydeauth @seydeauth43978
32 Followers 2K Following
Chuck McDowell @CharlesMcDsr628
899 Followers 4K Following Plumber /played in a rock band 80's and 90's love to have fun and do some crazy stuff
Dan Tate @dantate2
631 Followers 869 Following FTP OG, I Am ALS Board, fighting ALS, “Democratic Party” not “Democrat Party”, words matter otherwise why use them.
razadu @razadu_
110 Followers 333 Following Experiencing ALS symptoms for several months now and anxiously awaiting a diagnosis; several other medical conditions have been ruled out
June Paterson @JuneoqPaterson
20 Followers 1K Following Gathered on the site of girls from all US states 😼 They are ready to meet Some have naked profile photos! Watching this https://t.co/2j5C5RsMBp
Paris Nathan @ParisavNathan
22 Followers 872 Following Lured the best beauties from all US states 😚 Ready for private meetings Nudes in profile! Watching this https://t.co/vjalBhAFHf
Kasandra Foster @KasaAFoster
160 Followers 796 Following
Bill P Fights @WilliamP_Sr
131 Followers 338 Following Love my family and God bless the USA 🦅. Whiskey on the rocks. In the fight of my life. I hate ALS!!!!
BridgetRebecca @BridgetRebecca4
841 Followers 663 Following Momma bear 🐻 fighting for ALS treatments and a cure #Andrewsstrong
AnneeK @anneek10s
375 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
335 Followers 530 Following We Are… the Betty’s Brigade Foundation ________ We Are… Fighting ALS Together _________________ - to raise ALS awareness & funding
NeuroSense Therapeuti.. @NeurosenseT
538 Followers 269 Following A Clinical stage Biotech company. Advancing novel therapy for ALS and neurodegenerative diseases. Nasdaq: NRSN $nrsn
ALS Network @theALSnetwork
62 Followers 130 Following Posting to support caregivers and families suffering from ALS. Currently caregiving. Finding little time as my darling goes paraplegic. Bless you all.
Eileen Kelley @Eileen123Kelley
77 Followers 988 Following
Amy Stiens @StiensAmy
75 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 . ❤️
Teamhighoctanejules @Juleshighoctane
22 Followers 214 Following Dad, husband, gamer ALS Warrior. Mom, wife, mystic. ALS Advocate. Podcast hosts: The Couple Shift Right Here, Right Now
ALS ONE @alsone_official
949 Followers 634 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
Ken M @kjmark
131 Followers 689 Following Chiefs, Yankees and golf fan. Hoping ALS patients get access to needed treatments.
All is Well: Lessons @AllsWell333
619 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
Kaiser🇪🇺🇩�.. @FlyGuyKaiser
79 Followers 656 Following
Lee Morrison @LeeMorrison2022
370 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!!
Shari Doss Luis @shari_luis
10 Followers 60 Following
アラフォーALS @ALS7693636895
1K Followers 5K Following 2023年にALS（筋萎縮性側索硬化症）という難病の確定診断を受けました。同じ病気を持つ方々や、難病、障がいをお持ちの当事者及び支援者へ向けて、色々と発信していこうと考えています。
Holley Broughton @holleybb
541 Followers 3K Following “You play the game in front of you.”-Nick Saban.#livingwithALS
JC @JC75408607
558 Followers 449 Following Diagnosed with ALS 3/30/22. Living life day by day while I try and process this journey.
kate nickels @linkkat1180
286 Followers 2K Following
Antonious Block @BlockAntonious
239 Followers 642 Following Son, brother, cousin, husband, father, & uncle. Pilgrim and Puritan. Hopeful. ALS diagnosis the summer of 2022. Texas Aggie.
Reena Kalik @msmaureen90
456 Followers 5K Following
Helen Taylor @HelenTa02262275
35 Followers 285 Following Just about managed to bat off breast cancer at 51 constantly worrying the little shit will be back 😠
jack @jchang124
47 Followers 573 Following
D. Cross @debbiefincher89
430 Followers 2K Following
Morris R1 Crew @R1_Crew
274 Followers 365 Following Faster & farther🌻 Share Your ALS Clinic Experience:https://t.co/C6jj5wYmQb
Lindsay Cochran 🇺�.. @lcochran8217
3K Followers 3K Following I come from a long line of strong women! 💪🏻 Mother. Gamer. Animal lover. Residential architect. Smartass. LGBTQ+ Ally. I’ll be your mom! #bluecrew #armymom
Laura Hanson @lamhanson
714 Followers 495 Following Living with ALS since mid 2019. I carry the C9orf72 mutation. Living everyday with focus on the present. Grateful for the wonderful & powerful ALS community 💕
American Association .. @AACYorg
2K Followers 3K Following The American Association of Caregiving Youth® is the only organization in the United States dedicated solely to addressing Caregiving Youth issues/solutions.
Cynthia B - c9orf72 @CynthiaBarker22
77 Followers 136 Following
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.
Ashley Lee @AshL1225
92 Followers 387 Following
Raymond Williams @wheels2017
131 Followers 1K Following
Sometimes I Shake @shake_sometimes
246 Followers 466 Following feature-length documentary about life, death, love & jazz 🎥🎶 #endALS #parkinsons #sometimesishakemovie directed by @jared_cal, produced by People People Media
Mary @lovebooks1230
392 Followers 844 Following Mom and grandma. Believer in social justice. Liberal Democrat. Support Biden. I love reading books, working jigsaw puzzles, diamond painting and other crafts.
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Kelsie Snow @kelsieswrites
61K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
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.
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.
Sarah Nauser @SarahNauser
12K Followers 517 Following Dominating ALS one day at a time. “Love the life you live and live the life you love” Go Royals! #FightLikeAGirl
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
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.
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.
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.
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
Shah Minokadeh, M.D. @MinoShah
4K Followers 730 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal ALS
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.
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)
Stew @jonstew1982
2K Followers 193 Following Living with ALS, “If you’re not part of the solution then you are the problem.” Love my wife & kids more than ANYTHING!
Mandi @RunningMama0522
2K Followers 1K Following
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
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 909 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.
James Lindsay, full v.. @ConceptualJames
488K Followers 479 Following Pro-America. Anti-Communist. Based af. 🇺🇲🇺🇲🇺🇲
Meghan McCain @MeghanMcCain
795K Followers 705 Following Rabble rouser. Mountain mama. Political nepo baby. 🇺🇸🌵
Eli Steele @Hebro_Steele
27K Followers 368 Following Filmmaker. American. Principles cannot be canceled. Substack: https://t.co/zURrTUrmAz & https://t.co/8wLzgRDGOy https://t.co/NQkInYewt9
Andrew Lawrence @andrewlawrence
96K Followers 1K Following Comedian, for live bookings [email protected] Here I am on YouTube- https://t.co/JC0SlQzmPd
Pat Condell @patcondell
136K Followers 370 Following Free speech for all. I’ve stopped posting on YouTube due to censorship. All new videos will appear here first and can be found under the Highlights tab.
Dr Jordan B Peterson @jordanbpeterson
5.2M Followers 2K Following Best-Selling Author | Clinical Psychologist | #1 Education Podcast | Listen to the podcast here:
Dan Carlin @HardcoreHistory
443K Followers 148 Following Dan Carlin's Hardcore History Twitter feed quote: Yes, I know the show is late... endquote
Rain Consulting Group @RainConsulting
224 Followers 48 Following MPS Scholar in Transformation Leadership & Fierce Advocate for Neurological Diseases.
Tom Fitz 👨🏻�.. @_wobblewobble
518 Followers 428 Following I’m just a guy fighting ALS the best I can, tweeting about all things programming 👨💻and my toddler 👼
Julie Banderas @JulieBanderas
181K Followers 2K Following Emmy Award-Winning FOX Anchor, Mommy to 3 little humans and Pooper Scooper to 2 dogs. So basically I'm a full time cleaning lady who goes to my TV job to relax.
BridgetRebecca @BridgetRebecca4
841 Followers 663 Following Momma bear 🐻 fighting for ALS treatments and a cure #Andrewsstrong
Katie Green @Katiegreenradio
3K Followers 510 Following “News Lady” and asst producer for Armstrong and Getty @armstrongandgetty
Carlos Sainz @Carlossainz55
2.5M Followers 340 Following 🏎 Formula 1 driver for @scuderiaferrari Follow me... if you can. Instagram: @carlossainz55 #CARLOSSAINZ
Riley Gaines @Riley_Gaines_
1.0M Followers 459 Following University of Kentucky swim '22 😼 Host of Outkick's Gaines for Girls podcast🎙️ Director of the Riley Gaines Center⛹🏻♀️ Get my new book at link in profile📖
Oliver Anthony Music @AintGottaDollar
447K Followers 4 Following
Ajay Sampat, MD @Sampat_md
475 Followers 37 Following Father, husband, son, and brother. Clinical educator and neurologist. Person living with ALS.
Townhall.com @townhallcom
383K Followers 1K Following Townhall.com is the #1 conservative website with political commentary from over 100 columnists and a community of millions of grassroots conservatives.
AnneeK @anneek10s
375 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
Andrew McCarthy @AJamesMcCarthy
283K Followers 453 Following Exploring the universe from a backyard in Arizona. Get on my mailing list before my next print drop 👇
Boo @IzaBooboo
5K Followers 971 Following I smell like flowers and money. Queen of the North, Protector of Cows, Defender of Butter. Quietest prolific baker on this hellsite. Anti-Ultracrepidarian.
Oli London @OliLondonTV
390K Followers 3K Following 📖Author | 📺 News Contributor | 🗣️Public Speaker |📚Get Gender Madness⬇️
BraunAbility @BraunAbility
3K Followers 2K Following Providing automotive mobility solutions to increase the quality of life for people with disabilities.
Simon Ateba @simonateba
683K Followers 460 Following Chief White House Correspondent at Today News Africa in Washington. Email: [email protected]. Kindly support my work here: https://t.co/8N2M6jIayy
Victor Davis Hanson @VDHanson
539K Followers 41 Following Senior Fellow @HooverInst. Classics and military history. Opinions are my own.
CNN Politics @CNNPolitics
4.6M Followers 329 Following Political news, campaign stories and Washington coverage from CNN Politics.
Clown World ™ 🤡 @ClownWorld_
2.4M Followers 501 Following Official #ClownWorld ™ 🤡 #NoCaptionNeeded ** DM us for removals/credit
Richard Grenell @RichardGrenell
1.3M Followers 3K Following I’m stronger after cancer. my dog runs my life. imperfect follower of Christ. https://t.co/id5AM52ePr
Charles V Payne @cvpayne
919K Followers 18K Following Trying to make sense of this world while becoming the man my mother raised- I give a damn, love my family and country...and making people $$$$
America's Newsroom @AmericaNewsroom
117K Followers 612 Following Live on the FOX News Channel Every Weekday From 9-11 EST! #AmericasNewsroom
Hodgetwins @hodgetwins
2.5M Followers 3K Following Merch & Giveaways at: https://t.co/kxb8qjGCDW —— PODCAST: @thetwinspod
PragerU @prageru
989K Followers 972 Following PragerU creates educational content promoting American values. Download our app and watch more at https://t.co/3QSteHUg7S. Think better. Live better.
Sara Gonzales @SaraGonzalesTX
352K Followers 2K Following Host of Sara Gonzales Unfiltered 7 pm ET on @BlazeTV | CEO of American Beauty | Executive Director of Defend Our Kids: TX | “Spicy Bitch”
NBC Bay Area @nbcbayarea
420K Followers 2K Following Thank you for stopping by @NBCBayArea - the place to go for exclusive local stories, breaking news, weather and sports. Facebook: https://t.co/EID86FEI8f
NBC Bay Area Weather @NBCBayWeather
6K Followers 556 Following Complete Bay Area weather coverage from @NBCBayArea's team of meteorologists: @JeffRanieri, @RobMayeda, @KariHallWeather, @NBCVianeyArana & @cinpimentelnews.
Sarah Isgur @whignewtons
63K Followers 666 Following @ABC News contributor, Advisory Opinions host, @thedispatch editor, putting the R in @LRCkcrw, Texas expat, @Harvard_Law grad, cat/brisket mom.
Lily Tang Williams @Lily4Liberty
67K Followers 9K Following Candidate (R) for Congress 2024 #NH02 | Survivor of Mao's Cultural Revolution | Live Free or Die | Entrepreneur and Professional Speaker | Wife and Mother |
Laura Hanson @lamhanson
714 Followers 495 Following Living with ALS since mid 2019. I carry the C9orf72 mutation. Living everyday with focus on the present. Grateful for the wonderful & powerful ALS community 💕
Charles Leclerc @Charles_Leclerc
3.1M Followers 187 Following Formula 1 driver @scuderiaferrari - JB17 - Papa👼
Joybound Adoptions @JoyboundAdopt
3K Followers 4 Following Unleash Happiness | Follow @JoyboundTweets for current news/available animals from Joybound People & Pets.
Christine Gilmore RN @KickenALSAss
2K Followers 2K Following ALS Bad-Ass. Registered Nurse. MHA . Married. ♿️. DM Scammers will be reported.
Jennifer Bullard @JenniferBull09
177 Followers 791 Following Retired first grade teacher. Fan of problem solvers. Here to learn.
Lex Fridman @lexfridman
3.5M Followers 126 Following Host of Lex Fridman Podcast. Interested in robots and humans.
Honestly with Bari We.. @thehonestlypod
28K Followers 2 Following Uncancellable. Unowned. Free and fearless. New stories and conversations every week from @thefp. Hosted by @bariweiss.Make this the next project runway challenge #als #wheelchairfashion #fashion #adaptablefashion #adaptiveclothing @Walmart @ProjectRunway
If you think your parenting days are over because you’re an empty nester… since ALS struck at 37, I have never needed my parents more and they are holding me in the palm of their hands. Tonight, at 43, I texted them, “you are the best mommy and daddy in the universe.” ❤️❤️
This is the moment that we first found out about the amazing grant from Mackenzie Scott and her incredible foundation. I am so proud of the amazing IAA staff and community. As you will see, disbelief turns into happy tears. Today, I cannot stop smiling.
I AM ALS is humbled to have been selected as an awardee of Mackenzie Scott’s #YieldGivingOpenCall. We were gifted an incredible $2 million – the largest single gift in I AM ALS’ history! Read the full press release: iamals.org/updates/i-am-a… (1/3)
Holy f'ing sh*t! This is a big deal! Thank you to Mackenzie Scott and her amazing foundation for lifting up ALS and @iamalsorg. Thank you, thank you, thank you!
I AM ALS is humbled to have been selected as an awardee of Mackenzie Scott’s #YieldGivingOpenCall. We were gifted an incredible $2 million – the largest single gift in I AM ALS’ history! Read the full press release: iamals.org/updates/i-am-a… (1/3)
Hey @elonmusk #Neuralink + #VisionPro. Make it happen for #ALS patients.
@leanne_yacyshyn I feel that the #pALS on here are family. While everyone has a different experience, we understand each other. I too, long for what my friends are experiencing.
Two of my close friends came over today to help with wrapping Christmas gifts. I am very fortunate that my friends are still really involved in my life, but it is so hard to keep from being jealous when I hear them talking about work, vacations and parties. So hard! #EndALS
How did we get to this weird place? Telling people who are actually out in the world making a positive difference, "You're the problem."
I know I say it all the time but I miss my smile. I feel fewer people would be scared of me if I could smile
Bari Weiss A lot of people have shared this online … Skip to her speaking and it’s probably 40 minutes long. One of the most important speeches I’ve ever heard…ja Barbara K. Olson Memorial Lecture [NLC 2023] youtube.com/live/1V-kyy2zo… via @YouTube
Happy Birthday to me! I am 43. I do not live in a tree Or by the sea. But today is a day I wasn’t sure I would see. So today I am filled with glee. Happy Birthday to me!
Today is my last day being 42. A lot has happened over the past year, but I am still here. And for that I am grateful.
Living with ALS, I never know how many days I have left. But, one thing I do know is that I am grateful for today.
There are so many layers to the quiet suffering of ALS, for everyone affected. No one knows what lies behind closed doors. Do not assume to understand another's pain or the burden they carry. ALS connects us but doesn't imply permission to infringe uninvited.
People currently living with ALS and their caregivers are the first priority. Their opinions matter most. Their needs trump all of ours. Full stop. As a former caregiver, I am still in the fight. But my voice cannot and should not overpower the urgency of the present day people.
I’m so very tired of all the sanctimonious and cruel “experts” deciding what risks are acceptable for a terminally ill community. The utter lack of perspective and the sheer lack of respect for patient autonomy is pervasive and infuriating.
I will leave you with this. Israeli patients treated with Nurown. 2012 out of 12 patients 9 are still alive. Think about that tonight. And the Multiple Sclerosis trial had Clinically significant benefit. The US FDA panel voted 17-1 against approval tonight. Some stated that…
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