I have an idea that if I could provide a consultation for family members regarding adult Duchennes nursing expectations and care, that might be very helpful to us all. I would pursue this idea with family, if I could find a traveling Duchennes nurse who would go to Northern New York State (Watertown). Thank you for any leads or other information in this respect.
Also, I would enjoy knowing of any groups that meet on a regular basis, in Central or Western NY, or even in CT where I live.
Thank you. Aunt Sharon