The Road to Accessing Promising Treatments

As we said last week, I AM ALS will not stand for the status quo when that means tens of thousands of people are diagnosed with ALS and told there is nothing medicine can do. We also recognize that leadership doesn’t mean we have all of the answers. That’s why we spent the last week listening to the ALS community. Here is our proposed response, not to the outcome of a single trial but to everything we see happening in ALS research.

March 2, 2021

FOR PRESS INQUIRIES

Theresa Garner
[email protected]

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A note from I AM ALS CEO on a policy change

Brainstorm’s NurOwn Updates

In a first-of-its-kind meeting, I AM ALS brought together senior leadership from the Food and Drug Administration (FDA) and Brainstorm Cell Therapeutics, a U.S. biotechnology company that is developing a potential breakthrough ALS treatment, NurOwn.

ALS Signal and PaCTD

I AM ALS debuted the launch of ALS Signal: Clinical Research Dashboard. ALS Signal is a new global resource created by dedicated patients, caregivers and advocates to offer a user-friendly way to discover current ALS-related clinical research, allowing for efficient access to information that is vital to the ongoing efforts to end ALS.

ALS Disability Insurance Access Act of 2019

Twenty ALS advocacy groups collaborated together to thank the more than 360 Congressional members from across the aisle who have co-sponsored H.R. 1407 and S. 578, which would extend Social Security Disability Insurance (SSDI) benefits for patients living with ALS. The bill was signed into law by the President on December 22, 2020.

Get In. We’re Curing ALS Newsletter

Welcome to the Get in. We're Curing ALS newsletter from I AM ALS including weekly updates on what we were up to the week before, priority actions you can take to help further the movement and community happenings.

ACT for ALS

The Accelerating Access to Critical Therapies for ALS Act will make $75,000,000 available in FY 2021 and 2022 as part of a pilot to provide grants to support expanded access programs. It will bring treatments for rapidly progressing diseases for which effective therapies don’t already exist to patients beyond the ongoing clinical trial.

We will find cures for ALS. The only question is when. That answer depends on you.

Stay informed on I AM ALS’ progress and what you can do to help us make hope real.

Website Launch

I AM ALS launched a fully redesigned website focused on improving the user experience, with simplified language, a search bar, compatibility with all browsers and optimized function for impairments and disabilities. I AM ALS is a patient-centric movement revolutionizing how to fight disease.

Petition to Make Amylyx’s AMX0035 Available

In response to the New England Journal of Medicine publication of encouraging clinical trial results showing that Amylyx Pharmaceuticals’ AMX0035 brought statistically significant benefit to people living with ALS, The ALS Association and I AM ALS immediately called on the drug company and the FDA to make the treatment widely available as soon as possible.

Navigation

I AM ALS Navigation empowers patients, caregivers and their loved ones with relevant medical and research information, supports them emotionally, connects them with practical resources and helps them build a community around them.

2020 Legislative Priorities

In 2020, our legislative priorities are as aggressive as ALS is.

NIH Program: Accelerating Leading-Edge Science in ALS

The National Institutes of Health (NIH) announced it will invest $25 million over the next five years to spur innovative research on ALS and examine the links between ALS and other neurodegenerative disorders.

Promising Pathway Act

The Promising Pathway Act introduced in both the House and the Senate will amend the Federal Food, Drug, and Cosmetic Act to establish a time-limited provisional approval pathway for certain drugs and regulated medical products.