Sorry, I do not mean to say that the disease is only in the Lalumiere family. I am only saying I am trying to find out more about the Lalumiere family who came from Quebec and had this disease. One of the research papers I read was done on a large family from Quebec which had many family members with this disease. Of course the family names were left out but the paper indicated they were all related.
I am not sure if they intended to do the research on related people or they were studying people with the disease and then found they were related through DNA tests.
Good luck and let me know if I can help you or you can help me.