2021 Commitments


In year three, I AM ALS will continue the revolution

Here are our commitments in 2021:

Navigation 

We will expand the reach and services of the Navigation program as a resource to patients, caregivers and loved ones impacted by this disease so that no one has to face these challenges alone. We will grow the peer mentor initiative, showing how this community shows up for one another, and implement a strategy to reach diverse and medically-underserved ALS families with support. 

Cures for All 

Together with a collaborative network of neurodegenerative disease organizations, patients and biopharmaceutical companies, we will launch a wide-reaching media campaign. This effort will bring the Cures for All message — that a cure for one could unlock a cure for all neurodegenerative diseases — increasing public awareness of and providing direct avenues for all to support progress against neurodegenerative diseases (like Parkinson’s Disease, multiple sclerosis, Alzheimer’s Disease, Frontotemporal Dementia and others).

Policy Priorities 

We will support and fiercely advocate for swift access for patients to promising ALS therapies by working with biopharmaceutical companies, federal agencies, and Congressional leadership.  We are committed to realizing the promise of ACT for ALS to increase access to critical treatments for patients with ALS now and will work to build support for other legislative solutions, like the Promising Pathway Act, that provide additional solutions. Since I AM ALS launched in 2019, federal research spending for ALS has increased by $80M. In 2021, we will deliver on a founding commitment to increase federal funding for ALS research by at least $100M in our first three years. Additionally, we will develop regional teams to launch state ALS caucuses, bringing in more champions to drive change in state and federal policy. We now have the tools and a network of fierce advocates to support many legislative priorities that matter to individuals impacted by ALS, which we will detail in the coming days and weeks. Read more.  

Research

We will build a research platform to drive faster progress and speed treatments and cures for ALS. There are many challenges we can only take on as a community of patients and caregivers, researchers, biopharmaceutical companies, organizations and government agencies coming together to deliver on the hope of the progress we have seen in understanding ALS and how to treat it. We will provide a collaborative platform to develop and implement the strategy needed to take on the remaining challenges, together, and with the urgency required in response to ALS.  And we will insist that patients and caregivers are a central part of the discussion of research aims and outcomes, wherever those conversations happen.

Awareness 

We will double down on our efforts to transform understanding of ALS and activate a broad public audience to join our revolution. In growing our community of fiercely passionate advocates, we will greatly increase the number of people taking action with us to urgently drive toward treatments and cures. 

 

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