SOS 4 ALS @SOS4ALS
Advocate for people with ALS. This "rare" disease has taken 3 from my life. *Drugs in bodies, hope for souls NOW.* Opinions expressed are my own. Dallas, TX Joined July 2012-
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SOS 4 ALS retweeted
Just in the last 12 months, there have been 15 Accelerated Approvals for oncology treatments. These treatments ALL require postmarketing confirmatory trials to verify clinical benefit. FOR YEARS so many have fought & #DiedWaiting for the same @US_FDA urgency/flexibility for…
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SOS 4 ALS retweeted
An update of ALS Signal shows a trial for people with disease onset ≤ 5 years. It’s rare that people who have had symptoms greater than 24 mo. are eligible to participate in trials. Check out Cellenkos’ CK0803 (Tregs) Phase 1 trial now recruiting. iamals.org/get-help/als-s…
Good read about how @Cigna prioritizes $$$ over patient care propublica.org/article/cigna-…
Good read about how @Cigna prioritizes $$$ over patient care propublica.org/article/cigna-…
SOS 4 ALS retweeted
#NurOwn WORKED for my mama - thx to EAP: my family and the #ALS community got to soak up 2 more precious summers of @sandymorris333 magic💫 #NurOwn worked in the final phases of #ALS for my person, I wonder the effect this treatment might have on a newly diagnosed #PLWALS ?! ✨
SOS 4 ALS retweeted
.@DrCaliff_FDA @US_FDA the #ALS community delivered you a petition to grant #NurOwn a transparent & informative AdCom 3 months ago. While we wait, people have died from this 100% fatal disease. Provide the flexibility & speed you promised for ALS. Schedule The AdCom. #EndALS
.@Cigna, your flawed decision to deny people on your insurance coverage for Relyvrio is inhumane. Your decision impacts real people who are trying to fight a 100% fatal disease. They don't have time to wait. Reverse your decision now. @RepKeithSelf
.@Cigna, your flawed decision to deny people on your insurance coverage for Relyvrio is inhumane. Your decision impacts real people who are trying to fight a 100% fatal disease. They don't have time to wait. Reverse your decision now. @JohnCornyn @tedcruz #ALS
SOS 4 ALS retweeted
I am living with a terminal disease. I am also a patient advocate. I am a damn good advocate, but I need your help. The more followers I have, the more I can get government and pharma to pay attention. So my ask is: Will you follow me so we can change the world?
SOS 4 ALS retweeted
Naval Academy grad & USMC #veteran, Tyler died of #ALS at 37 yrs old. Tyler deserved access to every drug in the medical arsenal to fight the disease he got from serving our country Tyler deserved #NurOwn Tyler's kids deserved more time with their Dad oklahoman.com/story/sports/c…
SOS 4 ALS retweeted
ALS took my valentine of 38 years @becky_mourey ♥️ today. My heart is broken. 😞 I hope her advocacy makes life a little easier for the next generation of ALS patients #ENDALS @iamalsorg @alsone_official
SOS 4 ALS retweeted
. @becky_mourey was a beautiful, kind soul Gone today but her light will never be extinguished She fought so hard to get #ACTforALS passed & persuaded @SenWarren & @SenMarkey to sponsor it. Tragically, she didn't live long enough to benefit from her efforts RIP #ALS Angel
Brian Wallach @bsw5020
143K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease. #ALSisHere #SoAreWe
AZ Latina ☮️🌊�... @aVoice4ALS
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Sandra W. Marlowe @sandrawmarlowe
3K Followers 934 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
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Lisa's Legacy for ALS @LisaLegacy4ALS
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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. Animals are my Love!!
Sandra Abrevaya @sabrevaya
21K Followers 4K Following Wife to @bsw5020. Mama. Caregiver. CEO @synapticure providing medical care for Alzheimer’s, Parkinson’s and ALS. Co-founder @iamalsorg. EP @noc_film.
ALS Uncensored 🏴�... @ScottsFight
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No More Excuses ALS W... @als_now
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End ALS Now @EndALSNow
862 Followers 873 Following ▪Bri ▪I mainly amplify #ALS tweets ▪ALS=wretched, cruel, 100% fatal ▪RT=awareness, not agreement ▪🚫DMs🚫 ▪#EndALS ▪#SunflowerForSandy 🌻 ▪#RoseForJamie 🌹
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
SOD1 EndALS @CEHaddadNP
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Nicole Cimbura @nicolecimbura
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Christine Gilmore RN @KickenALSAss
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Mandi @RunningMama0522
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axeALSFoundation @stevens_nation
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5 Followers 221 Following
Oososat @Oososat7148639
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ALS News Today @alsnewstoday
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Adream @Adream03075527
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Shirley @ThoastoarbR3YY
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Deb Bellina @BellinaDeb
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All is Well: Lessons @AllsWell333
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人生あきらめ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。
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Judy Dudley @JudyDudley
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EdDee 🏳️🌈 @edcastle87
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ALS Society of NB and... @CareAndHope
499 Followers 2K Following ALS NB & NS is the life-affirming advocate for people & their families helping them navigate through a confusing & difficult disease with dignity & purpose.
car128 @crayne128
234 Followers 302 Following homesteader, lover of sustainable living, hater of ALS for stealing it all away from me, and for threatening to steal my family from me. We need NurOwn now!
GiGi08 @Gi08Gi
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LaVonne Roberts @LaVonneRoberts
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GettingUp.Org @GettingUpOrg
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[email protected] @shannongustgma1
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Slstrat @SusanSt52860850
130 Followers 350 Following Just a mom who lost her son to ALS on 10/10/24. He was a great son and an even greater husband and father. It’s f’n time for a cure! #Nurown
David @dnye6969
2K Followers 5K Following Im 58 year old contractor that lives in Pittsburgh, Steelers fan for life! God is good, America is first #1 i’m a proud patriot and citizen 8th generation 🇺🇸
Godwaypharma @Godwaypharma07
31 Followers 458 Following Godwaypharma is a natural cure based on oriental regenerative therapeutic. It was restored by us after many thousands of years of being forgotten.
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AZ Latina ☮️🌊�... @aVoice4ALS
4K Followers 5K Following Advocate for Amyloidosis, ALS & Rare Diseases. Enviro Justice, Foster Care & Gun Safety. Love LA sports. @EndRareDiseases on bsky
I AM ALS @iamalsorg
26K Followers 735 Following I AM ALS is the largest community movement made up of the very people living with, impacted by, and highly motivated to end ALS.
Sandra W. Marlowe @sandrawmarlowe
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Sarah Nauser @SarahNauser
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Mayuri Om Saxena @Mayuri_Saxena
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Shah Minokadeh, M.D. @MinoShah
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Lisa's Legacy for ALS @LisaLegacy4ALS
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Seth Poling @SethPoling10
4K Followers 375 Following Wild & Wonderful WV. FSU grad. Married to @erika_poling , Father to Liam & Bayler, ALS Warrior & advocate. #EndALS Founder of @project_seth
Sandra Abrevaya @sabrevaya
21K Followers 4K Following Wife to @bsw5020. Mama. Caregiver. CEO @synapticure providing medical care for Alzheimer’s, Parkinson’s and ALS. Co-founder @iamalsorg. EP @noc_film.
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 #IWriteALS
Kelsie Snow @kelsieswrites
58K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
ALS TX DAD @AlsDads
2K Followers 840 Following
Girl Travelin Alone @CathyStandish
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No More Excuses ALS W... @als_now
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ALS Advocacy @alsadvocacy
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Jane Lim @GIJANE_MD
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Mark Pimentel MD @MarkPimentelMD
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234 Followers 302 Following homesteader, lover of sustainable living, hater of ALS for stealing it all away from me, and for threatening to steal my family from me. We need NurOwn now!
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Beth Moore @BethMooreLPM
970K Followers 454 Following I love Jesus. I love Scripture. I like people. I like diversity. My interactions and follows do not equal endorsements or reflections of doctrinal alignment.
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542 Followers 1K Following 💪 MND (limb onset) diagnosed 5 March 2022 🪣 Sam's Bucket list: 73/100 complete. 🗣️ Wheelchair Life, Accessibility, Independence, MND/ALS 📍 Kent
Donald Davis @atcyyc
906 Followers 645 Following Proud father of 2 children on the spectrum! Retired Air Traffic Controller, Pilot,Sailing,#endALS,#autism aware, #f*ck Cancer, #RA, #Chiara,Conservative
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44 Followers 56 Following
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