Lisa's Legacy for ALS (@LisaLegacy4ALS) header
Lisa's Legacy for ALS (@LisaLegacy4ALS) profile picture

Lisa's Legacy for ALS

@LisaLegacy4ALS

Lisa Stockman Mauriello fought for Expanded Access to an ALS treatment. Lisa passed away 8.4.21. Honor Lisa’s legacy by advocating for ALS.

 Summit, NJ
Joined March 2021
  • Tweets5K
  • Following844
  • Followers1.7K
201Media
Photo by Lisa's Legacy for ALS (@LisaLegacy4ALS)Photo by Lisa's Legacy for ALS (@LisaLegacy4ALS)Photo by Lisa's Legacy for ALS (@LisaLegacy4ALS)Photo by Lisa's Legacy for ALS (@LisaLegacy4ALS)Photo by Lisa's Legacy for ALS (@LisaLegacy4ALS)Photo by Lisa's Legacy for ALS (@LisaLegacy4ALS)Photo by Lisa's Legacy for ALS (@LisaLegacy4ALS)Photo by Lisa's Legacy for ALS (@LisaLegacy4ALS)Photo by Lisa's Legacy for ALS (@LisaLegacy4ALS)
Remembering Lisa with affection, admiration and love today on the one year anniversary of her passing. We honor her courage and legacy. Lisa you continue to guide and inspire. You are a Northstar shining bright for all fighting ALS. #endALS Join the fight at @iamalsorg
Image from Lisa's Legacy for ALS (@LisaLegacy4ALS)
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Lisa's Legacy for ALS retweeted
ALS Advocacy (@alsadvocacy) profile picture
ALS Advocacy@alsadvocacyOct 5
mybuckhannon.com/buckhannon-…
Buckhannon nonprofit to offer up to $4,000 a year for West Virginians with ALS

Buckhannon nonprofit to offer up to $4,000 a year for West Virginians with ALS

West Virginians living with ALS can apply starting November 1 for up to $4,000 a year from The S.E.T.H. Project for equipment, home changes, medical supplies and qualified caregiver wages.

mybuckhannon.com
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Another amazing human taken way too soon by ALS. Thank you Brooke for using your smarts, creativity, tech knowledge, social media savvy and mostly your incredible sense of humor to educate about ALS. We hope you and Dray are reunited and creating some laughs.
Marc Benioff (@Benioff) profile pictureMarc Benioff
@BenioffOct 2
I am just devastated to hear of the passing of Brooke Eby @limpbroozkit. Brooke was an amazing warrior with an attitude so positive it could melt a glacier. All of my thoughts are with her Ohana at this time. May the One who brings Peace bring Peace to All. ❤️
Image from Marc Benioff (@Benioff)
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Lisa's Legacy for ALS retweeted
I AM ALS (@iamalsorg) profile picture
I AM ALS@iamalsorgSep 29
ACT for ALS passed Congress with ONE DAY to spare! 🎉 Your emails, calls, meetings, petition signatures & relentless advocacy made this possible. THANK YOU! Thank our congressional champions: bit.ly/A4A-TY Keep this work going: bit.ly/giveALS
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Lisa's Legacy for ALS retweeted
I AM ALS (@iamalsorg) profile picture
I AM ALS@iamalsorgSep 29
ACT for ALS has passed and will become law! Take a second with that. The House passed it. The Senate passed it. And now it’s on the way to the President’s desk to become law—because of OUR advocacy.
Image from I AM ALS (@iamalsorg)
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Lisa's Legacy for ALS retweeted
ALS Advocacy (@alsadvocacy) profile picture
ALS Advocacy@alsadvocacySep 24
pennmedicine.org/news/penn-a…
Penn and Miami researchers launch study to detect ALS and frontotemporal dementia before symptoms...

Penn and Miami researchers launch study to detect ALS and frontotemporal dementia before symptoms...

pennmedicine.org
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Lisa's Legacy for ALS retweeted
I AM ALS (@iamalsorg) profile picture
I AM ALS@iamalsorgSep 15
THANK YOU!! In just 4 days, we collected more than 20,000 signatures telling the House & Senate to FINISH THE JOB now, and delivered this powerful video along with the petition. Tell your own rep about the petition & our national push to finish the job: bit.ly/fundALS
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Lisa's Legacy for ALS retweeted
ALS Advocacy (@alsadvocacy) profile picture
ALS Advocacy@alsadvocacySep 15
Yesterday I went to a meeting related to the work of the ALL ALS natural history study. It is the big, growing, contemporary study that we have always needed, but without a reauthorized Act for ALS, all of that work could stop. Pls contact your Rep and Senators today!!!
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Take action for Sandy and all fighting ALS. The below link makes it easy and quick.
I AM ALS (@iamalsorg) profile pictureI AM ALS@iamalsorgAug 28
Announcement: It's the Sandy Morris Day of Action! Four years ago today, we lost the incredible and beloved ALS advocate Sandy Morris. Let's honor Sandy the way she asked! Treat yourself, and contact Congress. Tell lawmakers: Reauthorize ACT for ALS! bit.ly/fundALS
Image from I AM ALS (@iamalsorg)
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Lisa's Legacy for ALS retweeted
ALS Advocacy (@alsadvocacy) profile picture
ALS Advocacy@alsadvocacyAug 20
US Air Force, Navy, and Coast Guard veterans face higher rates of rare nerve disease ALS than other vets, study finds businessinsider.com/air-forc… via @businessinsider
Air Force, Navy, and Coast Guard veterans face higher rates of rare nerve disease ALS than others

Air Force, Navy, and Coast Guard veterans face higher rates of rare nerve disease ALS than others

The study pointed to possible service-related exposures as potential ALS links but did not identify them.

businessinsider.com
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Lisa's Legacy for ALS retweeted
Baltimore Ravens (@Ravens) profile picture
Baltimore Ravens
@RavensAug 17
With profound sadness, we mourn the passing of our beloved O.J. Brigance following his extraordinary and heroic battle with ALS.
Image from Baltimore Ravens (@Ravens)
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Lisa's Legacy for ALS retweeted
ALS CURE Project (@alscureproject) profile picture
ALS CURE Project@alscureprojectJul 28
Join Stephen Piscotty as he supports ALS cure research. Get your tickets for this fabulous event with dinner and drinks provided along with 3 hours of fun Topgolf games. It’s a magical evening. Hope you will join us. Get your tickets at: paybee.io/@alscure@53
Image from ALS CURE Project (@alscureproject)
Image from ALS CURE Project (@alscureproject)
Image from ALS CURE Project (@alscureproject)
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Lisa's Legacy for ALS retweeted
ALS CURE Project (@alscureproject) profile picture
ALS CURE Project@alscureprojectJul 25
Join us for our fun 5th annual Topgolfin for a Cure for ALS on Sep 17 at the San Jose Topgolf with Oakland A’s Stephen Piscotty and Tyson Ross . Fabulous food, drink, desserts, auctions and 3 hours of exciting Topgolf games and prizes for all levels. paybee.io/@alscure@53
Image from ALS CURE Project (@alscureproject)
Image from ALS CURE Project (@alscureproject)
Image from ALS CURE Project (@alscureproject)
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Lisa's Legacy for ALS retweeted
ALS Advocacy (@alsadvocacy) profile picture
ALS Advocacy@alsadvocacyJul 18
Please take a moment this weekend to send a msg to your Member of Congress to just pass Act for ALS reauthorization. Just do it. So seldom do our elected officials have such an easy chance to do something bipartisan and good. Just do it.
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Lisa's Legacy for ALS retweeted
Sarah Langs (@SlangsOnSports) profile picture
Sarah Langs
@SlangsOnSportsJul 16
Most important part of schedule release #EndALS
Image from Sarah Langs (@SlangsOnSports)
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Lisa's Legacy for ALS retweeted
ALS Advocacy (@alsadvocacy) profile picture
ALS Advocacy@alsadvocacyJul 11
We have until eo Sept to have Act for ALS reauthorized. After that, it's gone. So now you see why a clean, simple reauthorization was desirable. Once the sausage-making starts, nothing happens fast... or sometimes, nothing happens at all.
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Lisa's Legacy for ALS retweeted
ALS Advocacy (@alsadvocacy) profile picture
ALS Advocacy@alsadvocacyJun 25
People w ALS, caregivers (even if you have lost your loved one), people affected by genetic ALS, if you are interested in science, this is for you. Be a part of the largest global symposium on ALS MND!
ALS/MND Alliance (@ALSMNDAlliance) profile pictureALS/MND Alliance@ALSMNDAllianceJun 24
⏳ The deadline to apply for the 2026 ALS/MND Patient Fellows Program is Friday, July 3, 2026. Interested in applying? Learn more here: als-mnd.org/events-programs/…
Image from ALS/MND Alliance (@ALSMNDAlliance)
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Lisa's Legacy for ALS retweeted
ALS Advocacy (@alsadvocacy) profile picture
ALS Advocacy@alsadvocacyJun 19
This is a program that will serve you well if you want to learn more about current ALS MND science. Applications are due soon. als-mnd.org/events-programs/…
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Lisa's Legacy for ALS retweeted
NO CONTEXT HUMANS (@HumansNoContext) profile picture
NO CONTEXT HUMANS
@HumansNoContextJun 16
Give a medal to whoever created this
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nesta.zoom.us/webinar/regist…
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Lisa's Legacy for ALS retweeted
MGH Neurology (@MGHNeurology) profile picture
MGH Neurology@MGHNeurologyJun 15
Before tofersen—a therapy for treating SOD1 ALS— was an FDA approved therapy, it was available through an expanded access protocol (EAP). In this paper, researchers describe the clinical and operational experience of this EAP. onlinelibrary.wiley.com/doi/… #ALSResearch @MuscleAndNerve
Optimizing Research Operations and Resource Utilization in ALS Care: Insights From the Tofersen...

Optimizing Research Operations and Resource Utilization in ALS Care: Insights From the Tofersen...

Introduction/Aims Tofersen is a gene-targeted therapy for individuals with superoxide dismutase 1 (SOD1) (+) amyotrophic lateral sclerosis (ALS). Prior to U.S. Food and Drug Administration (FDA)...

onlinelibrary.wiley.com
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