Precision Patient research

Your health monitoring should happen more than just 4 times a year

Mobile Research App

YOU are the key to power Patient research … to unlock the understanding of the disease. Just like fitBit and others empower fitness tracking through monitoring activity we will empower Patient driven Research.

Biometrics and Telemetry

Measuring force, stamina ,range of motion , movement analysis, gait & balance, dexterity, respiratory, voice patterns and general health. Tracking and understanding the complexities of ALS progression needs to reach beyond current subjective measurements of the past decades

Medications and Trials

Not only prescription and clinical trial participation , but a complete approach to modern and holistic treatment tracking. We believe there are many factors beneficial to those in our pALS community, there is no single answer to this complex problem

Clinical & Support teams

Beyond pure research. There are many people involved in your well-being. Your care team is a collection of people, you can decide exactly what information and if/when you want to share it with your support members.

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About

Why we believe YOU are the key to new discoveries
Every journey is unique there is no single path for ALS

This is the story we hear from all the doctors when we ask ... What does this diagnosis mean for me ? We feel helpless as we begin this new journey. The ALSNeverSurrender.org foundation plans to put an end to that feeling. By empowering every patient possible to not only play an active role in monitoring their own progression but also to ensure that each unique journey is tracked for current and future researchers to help unlock the mystery.

  • is it genetic ?

    Only in a few small cases ... typically less than 10%

  • 2 to 5 yr mortality

    80% ... yup that is what they tell us all in the beginning

  • EVERY 90 Mins

    Someone new is diagnosed .. and someone else will die

  • OUR GOAL - EVERY PATIENT MATTERS

    We hope that we can change the face of ALS research and get every patient to participate ... instead of only a handful that typically are involved with the clinical trial process.

Our TEAM - Supporting YOU

These are the people that have donated their time and expertise to guide and advise the foundation
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Steph Courdin

Patient Advocacy Director & pALS
Lead analyst in the feature/function design of the mobile research app .. Steph knows 1st hand what this battle is about. Diagnosed in 2013 with ALS while working for the Apple’s premiere Mobile Data analytics partner Roambi – The 1st company on the iPhone in 2008 and the iPad in 2010 offering rich interactive data intelligence.
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Dr. John Ravits MD

Clinical Neuroscience UCSD
A graduate of Yale University, earned his MD from the Mayo Clinic School of Medicine, completed internship and residency in neurology at UC San Diego. Currently participates with many of the national and international neuromuscular associations
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Daniel Linesman Phd

Research Advisor
Associate Professor of Biological Sciences at Denver University. 2000 PhD, Pharmacology – University of Michigan – Ann Arbor, MI 2000-2005 Postdoctoral Fellow/Assistant Research Scientist – Denver Veterans Affairs Medical Center – Denver, CO
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Catherine Printz – PT, DPT, NCS

Neuro PT Advisor
Dr. Printz specializes in neurological and oncological physical therapy. Working in a variety of settings, most recently within both inpatient and outpatient services at UC San Diego. A board-certified neurologic specialist by American Physical Therapy Association
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Chuck Rossi

Operations Advisor
With a long history in software development and cloud operations including companies such as Facebook and Google. Recently an advisor on the Presidential Technology review committee.
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Chris Tyler

Analytics Repository Advisor
Chris comes to us from a rich background in Analytics, most recently an OEM Advisor at IBM Analytics guiding other software companies down the path of integrated solutions.
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Yvette Francino

Lead Writer – ALS Journeys
A graduate of Regis she joins us as our lead writer for our ALSJourney stories. An active fundraiser and advocate for ALS with an extensive background in writing and a Agile management training in hi-tech for companies such as McKesson and Sun Micro
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Brett Callaghan

Mobile App Advisor
Brett brings to us his expertise as Senior Architect from the vastly successful mobile analytics app company Roambi a premiere Apple development company featured on many of Apples own renowned product launch events.
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Dan Flynn

Mobile App Advisor
Veteran software engineer, Dan brings to us his many years in iOS mobile app development … and his leadership as a skilled sailor and 1st mate .. he will keep us on course and returned to safe harbors.
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Rick Hou

Web Advisor
The brain child at EyeCue Labs , Rick brings to us many talents from product management to web design and social media integration.

ALS Journeys

real stories of courage in the face of adversity

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