The Tale of an ALS Survivor # 24
Joining the World of Research
The 2019 Healing ALS Conference brought me into contact with Patricia Tamowski and Scott Douglas, the team that master minded the event. Patricia and Scott run HealingALS.org, an organization that promotes reversing ALS.
Patricia and Scott collaborate with Dr. Richard Bedlack, who oversees the ALS Clinic at Duke University’s Neurological Disorders Clinic.
DR. Bedlack has confirmed 41 ALS reversals from the records presented to him.
Patricia from Healing ALS asked me to send my medical records to Dr. Bedlack. After reviewing my records, Dr. Bedlack confirmed that I was his number 42 ALS reversal.
This was the confirmation that I needed to share my story.
Once it was confirmed that I had reversed my ALS, the doors opened for me to become part of the world of research.
I am in three research programs at Duke. One is for my genetics, another is for my life time exposure, and the third one happens within 12 hours of my death: the removal of my brain and spinal cord to be studied by Duke and the National Institutes of Health.
My wife, Mona, was not happy about that last decision.
I expressed my determination to her to be as helpful as possible in this fight so others might have a better chance to survive. Mona could see I was dead serious about my part in ending ALS. She agreed to notify the doctor and mortuary that I had chosen for the removal.
Another research program I entered was with the ALS Therapy Development Institute. My blood is drawn four times a year to search for biomarkers. In addition, I participate in a speech recording session once a month.
My commitment to participate in all these ALS research programs leads to why I am really writing this post. I feel it’s important for each of us in the ALS community to join forces.
I need your help.
My pALS are dying. I see them getting weaker and then I never see them again. This is so hard for me to bear, but it gives me deep satisfaction knowing I’m helping where I can.
Can you help?
everythingals.org/research has a little over 500 creative folks who have joined our early detection program. Through speech, facial gestures, and breath, we can start the path backwards to find the cause of ALS.
We do it using sophisticated artificial intelligence (AI) technology, but for our participants, all they need to do is speak into their computer screens for 10 minutes once a week.
We need 1,000 volunteers, half with no disability and the other half with ALS.
That’s when we can upload this data — keeping your identity anonymous — to our AI system and share it with the research community. That means you as well because YOU are part of our research community, and we need you to help us find a cause and a cure for this terrible disease.
It’s a new day in research, but only with your help.