ALS ACCESS (@brainmatters10) 's Twitter Profile
ALS ACCESS

@brainmatters10

Fighting for a cure for ALS/MND/ and it’s variants. Fighting daily for many years, for ALS drug access. Sod1 Gene carrier.

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calendar_today28-06-2018 21:29:02

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Lorri Cavaliere (@lorricav) 's Twitter Profile Photo

It would only be #BetterTogether if the The ALS Association joined forces with BrainStorm and helped to support and fund the Phase 3b trial. Without that, we are truly NOT #BetterTogether. That is all outlined in the lawsuit brought against them, by the 15 chapters that

ALS ACCESS (@brainmatters10) 's Twitter Profile Photo

The ALS Association chapters that stood up and sued the National ALS Association are heroes. The National was still sitting on about 75 million of ice bucket money. 16 Chapters are now on their own, against the awful actions of National. Meg Tirrell @stat CNBC Investigative Ask

ALS ACCESS (@brainmatters10) 's Twitter Profile Photo

So many asked/wanted more data, and a new trial for Nurown. Heartbreaking, that we are not seeing, grants or even support from Charities. The fact that they are ready to go to trial, but do not have funding, is tragic, so many had great results from this drug. What a horrible

ALS ACCESS (@brainmatters10) 's Twitter Profile Photo

Matt Bellina was able to stand after second dose of Nurown, for ALS. Yet not one charity is publicly supporting, or offering grants to get this drug to New trial. A both sad and tragic loss. I AM ALS axeALSFoundation Hope4Cure Racing for ALS

Matt Bellina was able to stand after second dose of Nurown, for ALS. Yet not one charity is publicly supporting, or offering grants to get this drug to New trial. A both sad and tragic loss. <a href="/iamalsorg/">I AM ALS</a> <a href="/stevens_nation/">axeALSFoundation</a> <a href="/Hope4Curenow/">Hope4Cure</a> <a href="/racing_als/">Racing for ALS</a>
ALS ACCESS (@brainmatters10) 's Twitter Profile Photo

This is what they offer, yet silent on a treatment that actually helped a man stand after 2 doses. Nurown is ignored, while this is promoted. Nurown is waiting to start a trial, but needs support and funding. 58 million, recently donated by one man, for research. Not a dime to

This is what they offer, yet silent on a treatment that actually helped a man stand after 2 doses. Nurown is ignored, while this is promoted. Nurown is waiting to start a trial, but needs support and funding. 58 million, recently donated by one man, for research. Not a dime to
ALS ACCESS (@brainmatters10) 's Twitter Profile Photo

Guess we can take it, that the ALS Charities are good with losing Nurown for good? The fact that people could be entering a trial very soon, and yet they will never know they lost the chance. ALS groups, are silent on it. Sadly, patients, pass away so quickly, the Charities, can