Precision Patient research
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.
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
Dr. John Ravits MD
Daniel Linesman Phd
Catherine Printz – PT, DPT, NCS
When Suzanne Maguire Phillips was told she only had 2-5 years to live, she was, of course, devastated. She was 36 years old with two sons under the age of 10, and what saddened her the most was the thought that it was unlikely she would live to see her sons grow to adulthood, get[…]
As I peruse the Facebook page of Andre Miller Sr., one thing is very apparent: This man lives a full life and is surrounded by love. With a diagnosis of ALS in 2006, Andre has had to endure many physical losses. However, he finds a way to make every minute count. He recently took a[…]
“I consider myself the luckiest man on the face of the earth,” said Lou Gehrig in his famous speech 77 years ago. It’s a rare person who would call themselves “lucky” when living with ALS, a degenerative fatal disease, but Lou Gehrig recognized that he was loved, and for that, he felt lucky. Lou Gehrig[…]
ALS Journeys Doug Clough and his family share their story and perspective Although all pALS face daily / weekly changes and challenges , a positive outlook ensures Doug continues to enjoy life & family #ALSNeverSurrender. Thanks for letting us share your journey .. we all hope it will be a long one. Special thanks to[…]
Full story coming soon .. Thanks to our new contributing writer Yvette !!