Thanks Lara for your thoughtful remarks . . . US citizens are required to have health insurance coverage, although some are not private . . . my feeling is their health insurer will cover such expenses if their disease does not have a cure . . . better chance with Amyotrophic Lateral Sclerosis than with other disorders . . . I hope some patients will try and share their findings here or somewhere; as you know there are very few people posting on social media but they are reading as page view counts show. In the US people should not have to identify themselves because the information is part of what HIPAA is all about but some venues practically require such disclosures . . . better to interact confidentially and thereafter share your findings with your licensed health care professional. It is very easy to get bad medical advice when the disorder has not cure.