I have been diagnosed with multi minicore disease, an apparently rare genetic condition. Although I am now 71 years old, this condition was not diagnosed in me until I was in my late 60s when I consulted my GP regarding my sudden inability to hold my head up because of neck muscle weakness. A muscle biopsy was performed in December 2013 resulting in the above diagnosis. I have been trying to locate a neck brace or collar which will allow me to hold my head up in a normal position, as at the present time I must either force my head up by forcing my chin up with my fist or the open palm of my hand. I have tried a Miami J collar which was promising but was damaged to the point of semi-uselessness by the weight of my head causing buckling of one of the side supports. I was given an Aspen collar by the orthotist to whom I was referred, but it is so uncomfortable that I cannot use it for more than half an hour at a time without unacceptable levels of pressure pain along the jaw line and breast bone. I live alone with my 89 year old husband for whom I must help perform many activities of daily living. Any advice regarding a different type of head and/or neck support would be greatly appreciated. (I am an American citizen residing in the UK as the spouse of a British citizen.)