ALS is not incurable – only underfunded.
The numbers tell us one part of the story – with more than $150 million raised for our urgent cause, and counting, between Augie’s Quest and our research partners via the ALS Therapy Development Institute (ALS TDI)! Even more importantly, is how these crucial dollars make a significant difference in our quest to end ALS.
How is Augie’s Quest moving ALS research forward and impacting people’s lives? How do we support our research team and innovative science at ALS Therapy Development Institute (ALS TDI)?
Short Answer: In many remarkable ways! Here are just a few examples:
1) Fast-Tracking the Most Promising ALS Treatment Yet
AT-1501: 2018 was a momentous year for Augie’s Quest, and your support was absolutely essential to our progress. Together with ALS TDI, we turned a significant corner in ALS research, successfully delivering a breakthrough treatment called AT-1501 into the FDA’s Stage 1 Human Clinical Trials. it marks the very first time a non-profit organization has ever reached this stage of drug development.
At-1501 – is one of the most promising ALS treatments in development today. It could work to slow down the progression of the disease. Which is incredibly important, because most people with ALS only live between 2-5 years. In our scientific research, we are driven to uncover ways to provide people with ALS the gift of more time.
That motivation influences our scientific strategy and our aggressive approach to discovery. But it also provides us an innovative model, a new roadmap to replicate and improve upon for future developments.
There is no other way to say it; the work around AT-1501 is a turning point in our ability to find effective treatments and an ultimate cure. And you helped make it possible.
2) Actively Testing More ALS Drugs than Any Other
But, what else is Augie’s Quest working on and excited about beyond AT-1501? What else are you making happen in this quest? What are the scientists at ALS TDI most excited about?
Simply put: we are testing a lot of drugs. We are driving more science, more than anyone else — we have the most robust pipeline of potential ALS treatments in the world at the ALS Therapy Development Institute. And more than any other time, we now have the best shot at success. We are working day in and out to bring the next promising ALS treatments successfully through to clinical trials, and as quickly as possible.
One big reason we’re in this position today – is our innovative model. It’s a combo driven by Augie Nieto’s business savvy and our collective, unlimited passion, to drive our vision forward to end ALS. We’re going at this disease far differently than our peers, and we’re seeing success. We’re certain one day we’ll go from saying “Lou Gehrig’s disease” to “Augie’s Cure.”
Fact is, there will never be a single, magic silver bullet to treat and cure ALS. We know ALS is very complex, and each person’s ALS is unique, progressing and presenting differently. We will need multiple treatment options to support the ALS community and give every person with ALS a fighting chance against this disease.
3) Growing Our Precision Medicine Program
Our innovative Precision Medicine Program (PMP) at ALS TDI uses big data to better understand ALS progression on a patient-by-patient basis, and provides people with ALS personalized information to manage their disease. Here, your giving is supporting people with ALS with real-time information to guide their personal ALS journey.
We are currently learning a tremendous amount from people living with ALS. And in turn, our scientists are now able to share back valuable, personalized insights with patients about their particular ALS disease. This idea is the cornerstone of PMP, of which we’ve now enrolled more than 500 individuals with ALS, and counting. This year, we have a goal of raising that number to 1,000.
We believe the next ALS breakthroughs will come from this robust program!
Through PMP, people with ALS monitor their disease progression in real-time via cutting-edge technologies that detect changes in their disease, particularly their movement and speech, two areas greatly affected by ALS. This individualized information helps people make more informed decisions and better manage their ALS, their progression and response to any interventions.
This program is an innovative, first-of-its kind data model working to drastically speed up the drug validation process for ALS. And, with these crucial data, our scientists are rethinking how we target and treat ALS, uncovering new ideas, likely treatments and pathways to an ultimate cure. And for our scientists, combing through these large datasets that trace and define a person’s unique experience with ALS helps us accelerate our science and think about how to streamline the clinical trial process, making it more agile and less expensive.
No other research entity actively engages people with ALS in this way, it’s a multifaceted program that is empowering people with ALS! This, is all because of your many incredible gifts!
4) Impacting Other Disease Advancements
What’s more, it is likely our findings and treatment discoveries for ALS may also help fight other neurodegenerative diseases in the future. The development of AT-1501 may also have a significant impact in Type 1 Diabetes and Alzheimer’s disease as well as many autoimmune diseases including Lupus, Sjogren’s syndrome, psoriasis, and rheumatoid arthritis.
5) New Technologies, New Partnerships Sparking New Science
In an exciting science collaboration with Google, we’re working with ALS TDI to develop applications to detect changes in people with ALS’ voice/speech patterns. We believe these “at home” innovations may show how speech illustrates ALS disease progression.
And in working together with technology leaders in these new ways, we hope to inspire, consider and rethink how various product offerings and experiences can also support people with ALS.
Today, we’re managing information on hundreds of people’s ALS, learning how they respond to various interventions and tracking rates of disease progression based on medical histories, genetics, demographics, voice recordings, and activity trackers.
Every dollar raised through Augie’s Quest to Cure ALS is dedicated to driving the innovative science happening at the ALS Therapy Development Institute (ALS TDI). While we are laser focused on curing ALS, we hope our research leads to medical advancements for all neurodegenerative diseases.
What is ALS?
Amyotrophic lateral sclerosis, or ALS, is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement.
There is no single diagnostic test for ALS. However, experts in the disease, usually neurologists specializing in neuromuscular diseases, are very capable of diagnosing it. There are, on average, 15 people diagnosed with ALS every day, and roughly 30,000 people in America have this condition.
Most people with ALS live 2-5 years after their first signs of disease. About 10% of people with ALS survive at least 10 years. This variable rate of disease progression makes prognosis difficult to predict and therapies challenging to develop.