SOD1 EndALS @CEHaddadNP
#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 Pennsylvania, USA Joined June 2017-
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AMA! Day 1 ALS Awareness month ❤️ #als #lougehrigsdisease #ama #ask #askmeanything
I have no more fight left. Nothing should ever be this difficult.
I have no more fight left. Nothing should ever be this difficult.
🧵
Blue cross blue shield has denied this lovely human twice access to the FDA approved Qalsody treatment for SOD1 patients. They deemed it "unnecessary". I wonder when BCBS became such experts on treatments for SOD1 ALS? Truly heartbreaking.
Blue cross blue shield has denied this lovely human twice access to the FDA approved Qalsody treatment for SOD1 patients. They deemed it "unnecessary". I wonder when BCBS became such experts on treatments for SOD1 ALS? Truly heartbreaking.
It’s unfathomable that patients with #SOD1-#ALS would be denied access to #Tofersen! @NICEComms need to urgently reverse their decision to review Tofersen via the STA route. UK Patients and researchers have been integral to Tofersen’s development and success!!
It’s unfathomable that patients with #SOD1-#ALS would be denied access to #Tofersen! @NICEComms need to urgently reverse their decision to review Tofersen via the STA route. UK Patients and researchers have been integral to Tofersen’s development and success!!
Time is neurons. There is no humane reason to delay the ONLY FDA approved treatment available for this young woman. @HCSC this family deserves better. Any symptomatic #SOD1 #ALS person must have immediate treatment. #fightingforshelby #endthelegacy
Time is neurons. There is no humane reason to delay the ONLY FDA approved treatment available for this young woman. @HCSC this family deserves better. Any symptomatic #SOD1 #ALS person must have immediate treatment. #fightingforshelby #endthelegacy
This is Shelby. She is a young woman with SOD1 ALS in Texas. For months, she has been fighting to get her insurer, Blue Cross Blue Shield of Texas, to cover the FDA-approved Therapy for SOD1 ALS, Qalsody from Biogen.
Shelby and her mother, Shiela, said, "Seeing the disease continuing to progress while we know there's a treatment that can help slow or maybe stop it is heartbreaking. We needed access to Qalsody months ago, but we truly need it today."
Cassandra Haddad, a SOD1 presymptomatic carrier and Vice Chair of Genetic ALS & FTD: End the Legacy, said, "Qalsody is the first hope SOD1 families have ever had. These denials set a dangerous and heartbreaking precedent for families who have witnessed generation after generation
..be decimated by ALS. Denying access to an FDA-approved medication that is both medically necessary and life-sustaining, is inhumane and has no merit. Insurance companies must stop coming between patients and their providers, between families and hope, between humans and life."
Tell BCBS of Texas to cover Qalsody for Shelby - any further delay will result in more unchecked disease progression. [email protected] #fightingforshelby #EndTheLegacy
@End_The_Legacy @HCSC stop this cruelty!
To learn about Genetic ALS & FTD, and discover what passion for change can accomplish watch this powerful talk from @FamilialALS detailing his family’s story, the founding of @End_The_Legacy, and his entry into industry with @CoyaTx. Cheers Daniel! youtu.be/V32waxMAnDM?si…
We must keep pushing to make #ALS a livable disease. #atriskalsftd #SOD1 @End_The_Legacy
11 year old Archie hasn't stopped fundraising since his first 7 in 7 challenge in 2022. Archie has just held a charity stall and completed an 11 mile trek, bringing his total to an impressive £1,700! Like Kevin, we think you deserve a big thumbs up 👍
We appreciate everyone who participates in genetic ALS research!
We appreciate everyone who participates in genetic ALS research!
Heading home. Thankful to participate in research AND seeing the at risk community needs care. Looking forward to the white paper I am proud to be a part of! #atriskALS #SOD1 #ALS @End_The_Legacy
We debuted as a formal non-profit in 2023 with support from @ALSHF . One year later - our self report! And at the bottom, a request. endthelegacy.org/latestnews
To all global ALS researchers, please consider applying to the US DoD - CDMRP. Open to anyone worldwide, therapeutically-minded lab research, biomarkers, outcome measures & more. A solid amount of USD available per grant. More non-US applicants = great. cdmrp.health.mil/pubs/press/202…
We were proud to offer this letter in support of expanding genetic protections in South Carolina. You can share yours in advance of a hearing on Thursday by emailing [email protected] . The associated bill is H 4218 . Let’s get this done!
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.
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
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.
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.
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
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.
ALS TX DAD @AlsDads
2K Followers 893 Following USAF Vet, Father of 4, background in Healthcare Management and Disaster Response Management, ALS (pALS) Advocate (views & comments are my own)
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.
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!
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
Christine Gilmore RN @KickenALSAss
2K Followers 2K Following ALS Bad-Ass. Registered Nurse. MHA . Married. ♿️. DM Scammers will be reported.
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.
End ALS Now @EndALSNow
957 Followers 934 Following ▪Bri ▪I mainly amplify #ALS tweets ▪ALS=wretched, cruel, 100% fatal ▪RT=awareness, not agreement ▪🚫DMs🚫 ▪#EndALS ▪#SunflowerForSandy 🌻 ▪#RoseForJamie 🌹
Vitamins DK @DonkeyVitamin
242 Followers 4K Following offer vitamins and supplements https://t.co/6lX91v1au9 https://t.co/zo3V69PMED https://t.co/sQmtttMy3w https://t.co/4AsuEubyqN https://t.co/wNZJnwTH4t https://t.co/QTd4LCNYKe https://t.co/tlG6l5uHd5 https://t.co/P7PbTJ3ntJ 🌱
Raad Ghantous @raadghantos175
87 Followers 778 Following Engineering Service A global technology , defence and engineering group that innovates to solve real - world problems . #stengineering #exxonmobil
Sci_Woman_Power @DeepSciWoman
7 Followers 112 Following My inspiration is being around smart people.Good ideas need to be spread,shared,so that even more new wonderful ideas will emerge.X=My personal opinions.
Bahtiye yemişçi @BahtiyeY
110 Followers 672 Following
Demi Johnny @JohnnyDemi95682
21 Followers 1K Following
MND-SMART @mndsmart
1K Followers 990 Following Innovative UK MND clinical trial from Euan MacDonald Centre for MND research at @EdinburghUni. Designed alongside people with MND. Searching for new treatments.
Susan Judson @suejud28
34 Followers 356 Following
Aliza Contreras @AlizaC80093
11 Followers 792 Following
Shirley Roberts @Shirley38175168
77 Followers 771 Following
Ramzi James @romzijames
18 Followers 542 Following 1 John 4:18 - There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.
Lewis @Lewis19791063
234 Followers 428 Following We stand for our, American values. Truth without apologies. Without Big Tech censorship or spin. Please follow, together we are stronger
Brian Louden @brilouden
128 Followers 41 Following
Diane Goldsmith @DianeG215
110 Followers 2K Following
Julie Suarez @epjjule
8 Followers 188 Following Wife,corgi mom,stepmother,aunt,baby sister,cousin and friend determined to help beat #ALS.Army brat! Texan (kinda).#ALSWarrior #EPSTRONG #GEAUXTIGERS
Offthegrid🇺🇸✝.. @offthegrid01
273 Followers 1K Following
Mindy Uhrlaub @MindyUhrlaub
159 Followers 169 Following https://t.co/4uNkZvnKfp. Author, Unnatural Resources. Familial ALS Warrior.
NURO CORP. @nuro_corp
690 Followers 3K Following One of the leading manufacturers of Neurotechnology.
Nickie G @Streathammum
246 Followers 670 Following Wife, mum, daughter, Sister, pencil sharpener in a South London school, swimmer, valley girl, love my life.
Stacey Kinsey @StaceyK1998
2 Followers 29 Following
Valerie T @Geminigemini356
4 Followers 98 Following
Susan @SusanaLearns
699 Followers 2K Following Senior Citizen Activist, Resister, Working Woman Devoted Grandmother Lover Of Beauty
Koolway Sports @Koolwaysports
1K Followers 4K Following Custom designed coats and outerwear for individuals in wheelchairs, to include unique custom clothing and products for our able body clients.
Jack and Fani are HER.. @Yusimite777
14K Followers 15K Following I’m here to get in ALL the “good trouble”. Fighting for democracy for my grandchildren and great grandchildren is what I’m here to do at this time in my life💕
alsHATER @HaterAlss
28 Followers 202 Following
Arden Barden @arden_barden
2K Followers 4K Following Forensic Lumberjack, I value intelligence and kindness, I vote Democrat, lgbtq friendly, currently disabled
Sigurbjorn Gudmundsso.. @Sigurbjorn79999
3 Followers 6 Following
Chris Barnette (Percy.. @cbbmlb7755
320 Followers 3K Following A Dad with 2 great sons & a Husband to my Hot Wife Amber. I’m a political junky, big Mountaineer Fan & a former football coach
Rima Chikhmous @ChikhmousR61768
8 Followers 76 Following
Kelly Schmelter @KellySchmelter
4 Followers 116 Following
Jessica Nohren @JessicaNohren
19 Followers 60 Following
Sininay @sininay28992
33 Followers 2K Following
SM @Dp8jy0nFemsLRY4
44 Followers 3K Following
Kathy @Kathy7483672148
113 Followers 435 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
steve Anderson @steveAn46633331
411 Followers 2K Following I love to discover new things, and see the surfaces of life,have the best of it all is so much joy and sweet to have a great mindset with a wonderful people.
Emily_Anderso @EmilyAnder29861
30 Followers 2K Following
SKYROS MALDIVES @SKYROSMALDIVES
18 Followers 400 Following Maldives Island Tour Operator Specialized in TRAVEL & TOURISM Leading International Tour Operator and Travel agent in the Maldives.
DeepaK Kumar @Deepak13900
17 Followers 143 Following A Father & Husband..... symptoms onset since 2021 waiting for my Dx
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.
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
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.
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.
Sarah Nauser @SarahNauser
12K Followers 518 Following Dominating ALS one day at a time. “Love the life you live and live the life you love” Go Royals! #FightLikeAGirl
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
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.
ALS TX DAD @AlsDads
2K Followers 893 Following USAF Vet, Father of 4, background in Healthcare Management and Disaster Response Management, ALS (pALS) Advocate (views & comments are my own)
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.
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!
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
Christine Gilmore RN @KickenALSAss
2K Followers 2K Following ALS Bad-Ass. Registered Nurse. MHA . Married. ♿️. DM Scammers will be reported.
Chris Snow @ChrisSnowCGY
26K Followers 194 Following Husband & Dad | Walking science experiment | Determined to beat ALS & win a Stanley Cup | Citizen of both 🇺🇸🇨🇦 | Assistant General Manager, Calgary Flames
Kathy @Kathy7483672148
113 Followers 435 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
Chantelle Sephton @ChantelleSepht1
166 Followers 312 Following ALS/FTD researcher, Associate Professor at Laval University. Check out our science: https://t.co/tM3jTrbr0z
Vinay @Vinay26178478
343 Followers 5K Following BS-MS student IISER Tirupati, #Biology MS-Thesis project : IISC Bangalore
Lil’ Optimist Annie @Optimist_Annie
319 Followers 1K Following •I know some things about some things. •Read a book. Be an autodidact. •Gen Z votes. •Ms. Independent. •I❤️dogs, sports, intelligent people.
Elin Adcock @elin_adcock
87 Followers 263 Following An ALS/FTD advocate and a vintage VW enthusiast, I am here to amplify voices, support caregivers, change healthcare policies and hoping to #endALS #fight2endALS
Ilayda Ulgenalp @ilaydaulg
327 Followers 690 Following Pronounced as: ill-eye-da | health policy, advocacy, #cdnpoli and @f1 nerd | Constantly learning and unlearning | #EndALS
MND Iceland @IcelandMnd
192 Followers 180 Following
Niamh O'Brien @NiamhLOBrien
385 Followers 927 Following Postdoc @UKDRI_Kings focusing on RNA dysfunction in ALS with @Ruepplab and @SMizielinska. High levels of caffeine consumption and all-round science nerd. @UKDRI
FrattaLab @FrattaLab
914 Followers 206 Following FrattaLab @UCLIoN working on #RNA biology of #ALS and #SBMA and #Kennedy's disease
Polymenidou Lab @PolymenidouLab
969 Followers 340 Following Our research is focused on understanding the molecular mechanisms leading to ALS and FTLD 🧪🧠🧬
Ruepp Lab @RueppLab
479 Followers 205 Following The Ruepp Lab (@UKDRI @KingsIoPPN) is interested in dysfunctional RNA metabolism in neurodegeneration with a specific focus on the pathomechanisms in ALS/FTD.
1akg.nft 🇨🇦 �.. @1AkG
830 Followers 3K Following 🧬 🌱 #TheHealingProject @withcanurta 👇🏾 | Blockchain, NFTs & Hemp to #HealTheWorld |
Virginia Arechavala @VArechavala
2K Followers 2K Following Scientist and mum. @ikerbasque Professor @biocrucesHR Interested in #RNAtherapy for #neuromuscular disorders. De Bilbao de toda la vida and adopted Londoner.
Sclerosis MDPI @SclerosisMdpi
40 Followers 347 Following Sclerosis is an international open-access journal on sclerosis and related diseases, published quarterly by @MDPIOpenAccess.
JuniorSong @Starlight7850
558 Followers 1K Following AJA / Liverpool / Indochine / Love Peace Respect / Fan d'Xbox / GamerTag : Unionwars / #teamaja
Patrick🍦 @CoanPatrick
110 Followers 603 Following Registered Nurse, ND alum/Irish fan. Passionate about travel, history, and the Grateful Dead
Bruce Virgo @BVirgo1
438 Followers 295 Following Aussie #MND #ALS Warrior now living in Scotland. Retired Maritime/Shipping lawyer (non-practising - Australia, England/Wales & Scotland).
Nicola Waters @AberdareNic
1K Followers 2K Following Valleys girl living in North Essex. Mother of two boys, age 12 and 9. Fighting MND one day at a time... #MND #ALS
Adam Smith @BetterResearch
12K Followers 4K Following #Dementia Research at @UCL - creator of Dementia Researcher supporting ECR Careers
Jonathan Brent M.D., .. @DrJBrent
273 Followers 1K Following
UK MND Research Insti.. @UKMNDRI
554 Followers 58 Following A national network of MND centres that work together to understand how #MND happens, what treatment works, and test possible treatments in clinical trials.
Shelley 🇨🇦 @Shines2017
620 Followers 962 Following 🇨🇦 Mom, ALS Warrior for 30yr old daughter diagnosed in Jan 2018
Diana Rogers @DRogers0824
214 Followers 332 Following Proud mom to three, wife, sister, daughter, aunt, friend who is living with ALS.
Iddo Magen @Iddomagen
63 Followers 46 Following Scientist @hornsteinlab @WeizmannScience. Topic: miRNAs as ALS biomarkers. Former writer @DavidsonOnline. Husband of Carmit, father of Amit and Gamba (dog).
Judith M @Canadiangal224
57 Followers 63 Following Retired - Volunteer ALS Society of Newfoundland & Labrador Tweets are my own.
Cellas A Hayes, PhD @c3llas
3K Followers 3K Following Super Dad | Neuroscientist 🧠 | Postdoc @Stanford_Neuro | Almost an AD Researcher | @StanfordPropel Scholar | YoungGiftedBlack l MS Boy | BiInSci🌈✊🏾🥷🏾
Nancy-Sarah Yacovzada.. @NancyYaco
495 Followers 3K Following Lady of python, machine learning & causality | PhD from @WeizmannScience | expertise in biomedical data science | red wine, spinning, trance music.
Stephen Chawner @DrSJChawner
107 Followers 202 Following Postdoctoral research chemist at Alzheimer's Research UK. PhD (Imperial College London), degree (University of Birmingham).
Chen Eitan @Chen_Cep_Eitan
226 Followers 292 Following Postdoctoral Fellow @NIH_NINDS | ALS researcher | focusing on neurogenetics in neurodegenerative diseases
Marc Shenouda @marc__shenouda
88 Followers 180 Following 👨🏻🔬 🔬 Post-Doc working to alleviate TDP-43 pathology in ALS 🧫🧠
philipmcgoldrick @_philmcgoldrick
100 Followers 268 Following ALS Researcher interested in C9orf72, nucleocytoplasmic transport, Importin β-1 and FG-Nups
Steph Fradette @stephfradette
78 Followers 141 Following
SMABEYOND @SMABEYOND
368 Followers 564 Following SMABEYOND – a Marie Sklodowska-Curie Innovative Training Network for research on peripheral organs in Spinal Muscular Atrophy (SMA) funded by the EU.
I. Lastres-Becker lab.. @Isalabe13
701 Followers 436 Following Parkinson's disease, Tauopathies, ALS🧪🧫🧬🔬 Neuroscience, neurodegeneration, biochemistry and Molecular biology. Women in Science 🧠
Sally Light @sallylight17
3K Followers 420 Following Previously Chief Executive of the MND Association. Ongoing supporter of the MND community. Pond swimmer and yoga student. Views my own.
Pedram Parnianpour @PParnianpour
93 Followers 371 Following PhD Candidate in Neuroscience | ALS Neuroimaging Research Unit @UAlberta | MRI, texture analysis, and machine learning
MarianneOriHimePilot @OriHimeMarianne
192 Followers 762 Following Working as a pilot of avatar robot OriHime at café DAWN🇯🇵. Mother to 2. HSP. Introvert. Interpreter. I ❤ sports, arts, music, manga, anime & seiyu. #ALSfamily
Francesco @FrancescoLiguo
502 Followers 510 Following Ricercatore alla ricerca della stabilità, stoico #pendolare Napoli-Roma, twitto di scienza ma non solo. #Drosophila lover, #ALS researcher. Classe 1990.
Nicole @NurseColey
34 Followers 87 Following Certified Family Nurse Practitioner & School Nurse Teacher
Prof Janine Kirby @J9Kirby
1K Followers 810 Following Researcher & Lecturer at SITraN, University of Sheffield. Tweeting on MND/ALS, Neuroscience & Genomics
Heather Marriott @HevMarriott
268 Followers 371 Following Postdoc in Translational Bioinformatics of ALS/MND @kingsmnd 🧠 | @mndassoc and @MNDScotland Pre-Fellow | All views are my own. she/they 🌈
Dr Caroline Vance @DrCarolineVance
234 Followers 451 Following Neuroscientist and head of @VancelabKCL, cricket lover, mum to two young boys, European at heart
Brian Dickie @DrBrianDickie
2K Followers 292 Following Director of Research at the UK MND Association
FUNDELA @FUNDELA1
4K Followers 2K Following Fundación Española para el Fomento de la Investigación de la Esclerosis Lateral Amiotrófica. #ELA #ALS #MND
AANP President @PresidentAANP
7K Followers 2K Following President of the American Association of Nurse Practitioners (AANP) Stephen A. Ferrara, DNP, FNP, FAANP, FAAN, sharing @AANP_News updates for NPs-as of 6/25/23
AANP @AANP_NEWS
30K Followers 5K Following The American Association of Nurse Practitioners is The Voice of the Nurse Practitioner® & the largest national professional membership organization for all NPs.
Tammy Moore @temerityTM
2K Followers 2K Following Digging in. ALS Canada CEO. Finding adventure and appreciation in the everyday - seize the day because life is too damn short. Be bold.
☆🌻May kicks off a Month of #ALS AWARENESS☆ ☆DID YOU KNOW: Every 90 minutes someone is diagnosed with ALS- Lou Gehrigs Disease and every 90 minutes someone dies from ALS. Don't let ALS strike anyone you love. Join the FIGHT! #EndALS #TeamMikeLopez #TeamUp4aCure
AMA! Day 1 ALS Awareness month ❤️ #als #lougehrigsdisease #ama #ask #askmeanything
I have no more fight left. Nothing should ever be this difficult.
Living with #MND is awful but when you hear that a proven, effective treatment is available for people with the SOD1 gene has been blocked. Well it’s hard to express the hopelessness and anger at certain decision makers. @NICEComms .. listen to the experts!
🧵
This is Shelby. She is a young woman with SOD1 ALS in Texas. For months, she has been fighting to get her insurer, Blue Cross Blue Shield of Texas, to cover the FDA-approved Therapy for SOD1 ALS, Qalsody from Biogen.
Blue cross blue shield has denied this lovely human twice access to the FDA approved Qalsody treatment for SOD1 patients. They deemed it "unnecessary". I wonder when BCBS became such experts on treatments for SOD1 ALS? Truly heartbreaking.
This is Shelby. She is a young woman with SOD1 ALS in Texas. For months, she has been fighting to get her insurer, Blue Cross Blue Shield of Texas, to cover the FDA-approved Therapy for SOD1 ALS, Qalsody from Biogen.
It’s unfathomable that patients with #SOD1-#ALS would be denied access to #Tofersen! @NICEComms need to urgently reverse their decision to review Tofersen via the STA route. UK Patients and researchers have been integral to Tofersen’s development and success!!
As a national group of MND healthcare professionals, patients and MND charities we have written to NICE requesting an urgent review of their decision about Tofersen. @NICEComms #MND @UKMNDRI @UK_mnd_CSG @mndassoc mndcsg.org.uk/#h.vl5d4roawb92
This is Shelby. She is a young woman with SOD1 ALS in Texas. For months, she has been fighting to get her insurer, Blue Cross Blue Shield of Texas, to cover the FDA-approved Therapy for SOD1 ALS, Qalsody from Biogen.
Shelby and her mother, Shiela, said, "Seeing the disease continuing to progress while we know there's a treatment that can help slow or maybe stop it is heartbreaking. We needed access to Qalsody months ago, but we truly need it today."
Cassandra Haddad, a SOD1 presymptomatic carrier and Vice Chair of Genetic ALS & FTD: End the Legacy, said, "Qalsody is the first hope SOD1 families have ever had. These denials set a dangerous and heartbreaking precedent for families who have witnessed generation after generation
..be decimated by ALS. Denying access to an FDA-approved medication that is both medically necessary and life-sustaining, is inhumane and has no merit. Insurance companies must stop coming between patients and their providers, between families and hope, between humans and life."
Tell BCBS of Texas to cover Qalsody for Shelby - any further delay will result in more unchecked disease progression. [email protected] #fightingforshelby #EndTheLegacy
Tailored information on research available for people with specific ALS and FTD variants - the Genetic Research Education Series will highlight what humans with these genes can do to help drive research.1/4
Welcome to our newest member of the team - Gen! 👋 Gen is excited to see how DNA technology is helping to advance our understanding of #MND #ALS and is helping lead to the development of gene therapies, like tofersen. Hear more from Gen on our blog ⬇️ mndresearch.blog/2024/03/21/mee…
To learn about Genetic ALS & FTD, and discover what passion for change can accomplish watch this powerful talk from @FamilialALS detailing his family’s story, the founding of @End_The_Legacy, and his entry into industry with @CoyaTx. Cheers Daniel! youtu.be/V32waxMAnDM?si…
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📢 The International Symposium on #ALS #MND is back for its 35th year! 📢 📆 6 – 8 December 2024 📍 Montreal, Canada ✍️ Abstract submission opens 7 May 💻 Virtual option (incl. selected live-streamed sessions) More info ⬇️ #ALSmndsymp symposium.mndassociation.org
11 year old Archie hasn't stopped fundraising since his first 7 in 7 challenge in 2022. Archie has just held a charity stall and completed an 11 mile trek, bringing his total to an impressive £1,700! Like Kevin, we think you deserve a big thumbs up 👍
She was locked in towards the end, and she was close to it in this photo from Thanksgiving prior to her passing. I was last with her over Christmas holidays but I took no photos. She died overnight on the bi-pap and the machine kept her chest moving. My father waited for the…
She feared ALS her whole adult life following her mom’s passing of it. And she could not receive any medical attention for it despite her entreaties until she had 3 non working limbs and bulbar issues. She didn’t deserve the treatment laid out here medium.com/@jeanswidler/a… 6/7
She was very active in the PTA , as we grew up she took up other roles in the church. Later in her life she found great friends and meaning in the local Rotary club as well. She was one of 8 children, the oldest, and kept in close touch with them all but esp her sisters. 5/7
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