in a world and time that is filled with exciting technology, access to instant information that could change the trajectory and outcome of a clinical trial for a terminal illness. we are told to cling to the past and repeat it over and over with the same deadly result

#WashingtonDC , save the date! May is #ALSAwarenessMonth , and Hop On A Cure is proud to partner with I AM ALS to bring you an evening of music and conversation with JohnDriskellHopkins of Zac Brown Band, and actor Aaron Lazar. More details to come, we hope to see you May 28!

#endALS

I'm reposting Scott's tweet because I have a long response below it. Help means investing in change, leveraging lessons learned from decades of failure and embracing Pharma's campaign promise from 2017 - Go Boldly. Please. Like lives depend on it.

DON'T LOOK AWAY!
Watch below to see the devastation that 100% FATAL #ALS has on EVERYONE diagnosed, 155 years after ALS was first identified.

ALS can strike ANYONE at ANY AGE. The incidence is rapidly increasing. You or your loved one could be next.

Over 90% of diagnosed…

Jacob says 'Look at my left leg!'
WOW!!!! THIS IS INCREDIBLE!
The most movement we've seen yet!
#EndALS #wheelinforals #nowhiteflags #nottodayals #Godsgotthis #teamjacobwv
#ALS #ion363 #Jacifusen #Ulefnersen #clinicaltrials
#ALS awareness #joshual1v9
#ButGod

I’ve heard a lot of great suggestions about how to power an #ALS trial to more accurately measure or capture functional improvement in the #NurOwn trial. None of these great suggestions have come from FDA Biologics public servants or those fighting against #NurOwn . They have never…

ALS advocacy in the exact format that we endorsed. The first time I met Brian and Sandra I knew I liked the I AM ALS organization for its “patient-led” format and commitment. I stand by them and support them. I love what they did with Synapticure and the mission.

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)

This is a “first” for ALS and other neurological diseases. Synapticure was brilliantly planned, launched and managed. Their mission is our wish. Thank you Sandra, Brian and everyone involved in getting this organization off to an amazingly wonderful start 2 years ago.

Early access to whole genome sequencing is crucial for children with rare diseases like ALS. Expanding the ALS registry to include children ensures their unique genetic profiles are captured, paving the way for targeted treatments and better outcomes. Every child deserves a…

Max Gelman Andrew Dunn Thanks for the article on #ALS but why did you leave out the upcoming readout of the TUDCA phase 3 trial? It’s important for people to know if the combination or if TUDCA alone is effective. Huge cost difference! Please report on both.
Deb Bellina
ALS/MNDMamaBears
Kandy Simons…

This new agreement with Coya and UNeMed Corporation, of University of Nebraska Medical Center, can potentially bring new therapies to patients suffering from #neurodegenerative conditions. Coya’s foundation and progress in low-dose IL-2 research make it ideal to leverage our findings to date. Learn more here:…

Thank you Lorri. Agree! Be part of the solution. I have a post coming out tomorrow on the 5th anniversary of our meeting with the FDA and how they can use regulatory flexibility to change the face of ALS clinical trial outcomes

What a difference they are making. Thank you Sandra Abrevaya and Brian Wallach for your courage, your passion, and your drive to move humanity forward. We are all so grateful to you!

Fraternity brothers Phi Delta Theta from UPenn. This was Lou Gehrig’s fraternity. Amazing young men living their commitment to serve the ALS Community! So much love and gratitude

This is the truest, most heartfelt post I’ve ever seen on X. Families are struggling with caregiving everyday. Thank you to Sandra, Brian, IAMALS, Synapticure and all of the staff and volunteers. They are changing everything about how we navigate ALS. I am so grateful.

I AM ALS will host a town hall with BrainStorm Cell Therapeutics on November 7th at 1pm ET to hear directly from BrainStorm about next steps, clarify any questions or uncertainty about their process with the FDA, & learn about the path forward for NurOwn. iamals.org/action/brainst…

Sandra Abrevaya I AM ALS Thank you so much for fighting to save my life and over 30,000 Americans.

So proud of the hard and impressive work of the coalition of I AM ALS volunteers and others to push forward PPA for faster access to promising treatments. Proud to testify last week, to read Brian’s words on his behalf because ALS has taken his voice, along with so much else.💔