This morning I had the pleasure of having my six month follow up by phone with the NINDS members who host my participation in a very important C9orf72 observation trial.
The National Institute of Neurological Disorders and Stroke is an Institute within the National Institutes of Health.
NINDS group includes Research Nurse Jennifer Farren and Dr. Mary Kay Floeter. I occasionally stay in touch with Dr. Bryan Traynor. Dr. Traynor is responsible for finding the connection of the C9 Gene and its link to familiar ALS in 2011. That is how we recently found that the C9orf72 is responsible for the Graham family passes to ALS and Dementia.
If my notes are correct, I am the 50th participant, and the last, to enter into this observation trial.
There is so much more I want to share regarding this gift and opportunity to participate in finding a cure. Stay tuned!