Morris ALS Principles @ALSprinciples
Joined December 2021-
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Hey, ALS/MND Science & Research Community: Include People Living with ALS/MND on all clinical trial protocol teams, and on advisory bodies to the National Institutes of Health, the Food & Drug Administration, Centers for Disease Control & Prevention. morrisalsprinciples.org
Hey, ALS/MND Science & Research Community: Provide virtual and in-person access to all conferences and scientific meetings for interested people living with ALS/MND. morrisalsprinciples.org
Hey, healthcare professionals: Provide accessible clinical and research options, including telehealth. Give options for genetic counseling and testing, even for those with no known family history of ALS/MND. morrisalsprinciples.org
Hey, healthcare professionals: Provide timely, comprehensive information about approved and investigational therapies. We are experts in our own disease and deserve to be informed. morrisalsprinciples.org
Hey, healthcare professionals: Communicate with us and about us as though we are LIVING with ALS/MND. We are partners with you in our own care. morrisalsprinciples.org
As people living with ALS/MND, we will: Fight for equity in decision-making. Lead to end ALS/MND. morrisalsprinciples.org
As people living with ALS/MND, we will: Protect our intellectual, physical, and financial dignity. Be global stewards of our disease and respected partners in the science of treatments and cures. Act as trusted peers with clinicians, researchers, and policy-makers.
Our political leaders must make ALS/MND research and therapy development a national priority. Our nation has rallied to confront HIV/AIDS, cancers, multiple sclerosis, and COVID-19. We demand that the United States leaders make a commitment to end ALS/MND.
We live on the ALS Clock. ALS/MND is stunningly brutal and kills us quickly. This disease will kill 50% of us within 3 years; it will kill 90% of us within 5 years. Our lives are worth saving. Work with that kind of urgency. morrisalsprinciples.org
From this point forward, we will not tolerate siloes, disorganization, or lack of urgency by any agency or organization that serves us. There will be Nothing About Us Without Us. morrisalsprinciples.org
We demand a seat at the table before decisions are made in drug trial design, research, healthcare policy, or anything that affects our care. Read the Morris ALS/MND Principles 👇morrisalsprinciples.org
We are a relentless community working alongside researchers, policy-makers, and clinicians to identify and cure this heterogeneous disease. #EndALS Learn more at morrisalsprinciples.org
This helpful guide makes it easy to leave a public comment about the upcoming FDA NurOwn Advisory Committee meeting. Nothing about us without us! iamals.org/updates/guide-…
Let's own the ALS narrative. #EndALS
Learn a little about the R1 Crew and the ALS Clinic survey that will change the game. Then visit bit.ly/3W1Ki7T to take the survey and read reviews left by real people impacted by ALS. #endALS
. @Cigna please read The Morris ALS Principles. These principles apply to you, too. morrisalsprinciples.org Coverage of an FDA-approved drug for ALS, per the label, is essential.
The Morris ALS/MND Principles are international!
The Morris ALS/MND Principles are international!
✅🌎🇮🇹🤝 conSLAncio Onlus, founded by Andrea Zicchieri, is proud to the support the new international guidelines of "The Morris @ALSprinciples" to #EndALS. ✅This document impacts you! ❤️❤️ 📰⬇️ bit.ly/3H5E5SA #ALSMNDWithoutBorders
Thank you, Dr. Vieira @FGVoneforty @ALSTDI for asking if people with lived experience of ALS are welcome at a scientific conference before agreeing to participate. Your leadership shows that together we will find cures faster. #EndALS
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Scott C @Silver_Fox10_7
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Brian Wallach @bsw5020
143K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease. #ALSisHere #SoAreWe
Sandra Abrevaya @sabrevaya
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I AM ALS @iamalsorg
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ALS Advocacy @alsadvocacy
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AZ Latina ☮️🌊�... @aVoice4ALS
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Mandi @RunningMama0522
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Deb Paust @PaustDeb
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Shelly Hoover @shellyhoover
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803 Followers 273 Following she/her All views and opinions expressed here are my own.
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