Since my diagnosis, I have been interested in participating in clinical trials for ALS. Not for myself, I understand that 50% of the trials are placebo, and we are still a ways off for any effective treatment of ALS (though I do believe in miracles!). But I have always felt that you cannot complain about anything without being part of the solution! I actually qualified for a clinical trial in Montreal, however, it meant travelling to Montreal every two weeks and I could no longer travel on my own. The good news is that Ottawa will be getting a "Centre of Excellence" with an ALS specific neurologist who will initiate trials in Ottawa, though we have been waiting for this for 2 years now. In the meantime, I am participating in an online clinical trial with the American ALS Therapy Development Institute. Every month or so they record my voice sample of "I Owe You a Yo Yo Today", and I complete an ALS-FRS-R (Functional Rating Scale). I received a very nice thank you letter for my participation and thought I would share it with you.
Hello Carol,
This is a note to say thank you, but I confess that it feels inadequate.
At the start of the Precision Medicine Program, we asked you to share voice samples with us. We told you that if we could learn to sensitively detect changes in your voices, we might be able to sensitively measure treatments that were helping those symptoms. This would ultimately help ALS researchers and doctors find treatments that work. We had no idea how we were going to do it, but we knew we’d never figure it out without first collecting voice samples.
For months, maybe years, you’ve called into a phone line hosted by us at ALS TDI to share your voice samples. You may have wondered if anyone was even listening to the recordings. Our clinical and research teams have listened to nearly every single one.
As we’ve listened, we’ve been reminded of one of the key ideas underpinning the Precision Medicine Program: that no two ALS experiences are exactly alike. In listening, we haven’t just heard ALS symptoms in your voices, we’ve heard your diligence, your frustration, your determination, and your humor.
In the past year, we partnered with researchers at Google to learn how to use these data. We’ve shared nearly 10,000 recordings with them. The Google team uses automated machine learning algorithms to parse the data embedded in the voice recordings.
It turns out Google has some smart folks! They’ve made real progress in tracking bulbar ALS symptoms. We are so excited about where the collaboration will take us, not only because of their know-how, but because of their team’s compassion. Like us, their team has listened to the voice files personally and were touched and motivated by what they heard from you.
You’ve told us, month after month, that you owe us a yoyo. Nope. You don’t owe us anything. We owe you our gratitude and so much more. We owe you progress and results. We’ll get there together.
Thank you.
Sincerely,
Fernando G. Vieira, MD
Senior Director of Preclinical Research
Co-Principal Investigator, Precision Medicine Program
ALS Therapy Development Institute
This is a note to say thank you, but I confess that it feels inadequate.
At the start of the Precision Medicine Program, we asked you to share voice samples with us. We told you that if we could learn to sensitively detect changes in your voices, we might be able to sensitively measure treatments that were helping those symptoms. This would ultimately help ALS researchers and doctors find treatments that work. We had no idea how we were going to do it, but we knew we’d never figure it out without first collecting voice samples.
For months, maybe years, you’ve called into a phone line hosted by us at ALS TDI to share your voice samples. You may have wondered if anyone was even listening to the recordings. Our clinical and research teams have listened to nearly every single one.
As we’ve listened, we’ve been reminded of one of the key ideas underpinning the Precision Medicine Program: that no two ALS experiences are exactly alike. In listening, we haven’t just heard ALS symptoms in your voices, we’ve heard your diligence, your frustration, your determination, and your humor.
In the past year, we partnered with researchers at Google to learn how to use these data. We’ve shared nearly 10,000 recordings with them. The Google team uses automated machine learning algorithms to parse the data embedded in the voice recordings.
It turns out Google has some smart folks! They’ve made real progress in tracking bulbar ALS symptoms. We are so excited about where the collaboration will take us, not only because of their know-how, but because of their team’s compassion. Like us, their team has listened to the voice files personally and were touched and motivated by what they heard from you.
You’ve told us, month after month, that you owe us a yoyo. Nope. You don’t owe us anything. We owe you our gratitude and so much more. We owe you progress and results. We’ll get there together.
Thank you.
Sincerely,
Fernando G. Vieira, MD
Senior Director of Preclinical Research
Co-Principal Investigator, Precision Medicine Program
ALS Therapy Development Institute
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