The I Am ALS Model
THE I AM ALS MODEL:
We are Building a Movement to cure ALS
By now you know that we are a patient-led, patient-centric movement. One that brings together key partners to deliver critical and innovative resources for patients, empowers and mobilizes patients and their networks to lead the fight for a cure, and that will transform the public understanding of ALS. So that we can flood the research pipeline. Your question is how? Good question. Answers below.
Movements always begin with a story. Our story is hope borne from recent scientific developments. Hope transformed into a movement by partners, old and new, who share our unceasing drive to make the impossible real. Partners including dozens of patients, caregivers, advocates, doctors, and corporations who have come together for the first time and donated millions of dollars in resources to build this movement. Over the last year these partners have helped I AM ALS:
Meeting with hundreds of ALS patients, caregivers, veterans advocates, doctors, nurses, biotechs and pharma companies
Conducting a multi-month analysis of ALS messaging to begin developing a national public relations campaign
Developing an overview of the foundations and resources involved in the ALS fight that can be kept up to date
Building and learning from a Patient Advisory Committee of patients, caregivers, and advocates
Creating and learning from a Scientific Advisory Committee of leading ALS clinicians and researchers
We are now 150 years into the fight against ALS, yet many ALS patients fight the disease on their own without the benefit of those who came before them. That ends now. It is time to ensure that everyone living with ALS now not only benefits from the efforts of those who came before them, but that they receive better, more targeted care than we previously dreamed possible. To do this, we are building a single platform to help connect ALS patients and their families to the amazing existing resources while building critical new tools to ensure care and support is there for every step of the fight against ALS. A platform where access and understanding about care is available to everyone, not just those lucky enough to live near an ALS clinic. And where patients and their families are full participants in this fight, making informed choices at every step how they want to live life to the fullest.
Engagement & Advocacy
We believe that faster cures and better health advocacy require building in individuals’ real power and ownership in the fight that creates a permanent community of action. A community where everyone has a role in the fight for a cure. Where patients feel empowered together to speak about and lead the fight against their disease. Where the supporters of patients can stand shoulder-to-shoulder with their loved ones and other people living with ALS as advocates. Where the general public is invested in and a part of this fight because they know their involvement can finally tip the scales. And where doctors and scientists have the resources they need to find a cure. Each of us has the power to change the world; together, we will.
When we hide illness, we make it harder to fight, harder to survive, and harder to cure. When we move it into the public consciousness, we can win fights previously thought to be impossible. In the fight against ALS, it is time to tell our story, not just to those already in the fight with us but to the world. For too long we have been talking to ourselves, hiding behind acronyms and scientific terms that block us from those not in the fight. It is it time to embrace a way of talking about ALS that anyone can understand. That shows not just our humanity, but our sense of hope. Not just our search for a cure, but the scientific breakthrough bringing it closer to reality every day. It is time to bring in those who have sat on the sidelines for too long. They have sat on the sidelines not because they were apathetic, but because they did not know we wanted them to join us. When they do, the question is not if we will defeat ALS, but when.
Funding: Accelerating the Search for a Cure by Driving Millions of Dollars Towards Research
Our model at I AM ALS is built to accelerate the time it takes to make this breakthrough real. The four pillars of the model were selected after we conducted extensive data analysis both of the existing ALS fight and the most successful fundraising and community building efforts in the last half-dozen years. The result is a unique and groundbreaking patient-led, patient-centric model that will help reimage and win the fight against ALS.
We Built Our Model after Exhaustively Collecting Data about the ALS fight by:
Meeting with hundreds of ALS patients, caregivers, doctors, nurses, biotechs and pharma companies
Conducting a multi-month analysis of ALS messaging to develop a novel public relations campaign
Building a full landscape of the foundations and resources involved in the ALS fight
Building a Patient Advisory Committee of more than patients, caregivers, and advocates
Building a Scientific Advisory Committee of leading ALS clinicians and researchers
It’s time to capitalize on these breakthroughs and accelerate the search for a cure.
Those funds will be granted out to leading ALS researchers through an investment model focused on accelerating research and development to speed (i) diagnosis of ALS, (ii) development of drug compounds to prolong ALS patients lives, and (iii) the development of a cure. Grants will be made collaboratively and after a rigorous scientific review process. Meaning that we will be working with leading ALS organizations to identify the most promising research projects. Those projects will then be reviewed by an independent scientific review board. For those found to have promise, we, in partnership with the other ALS organizations, will fund them as quickly as possible. So we can benefit from their research as soon as possible.