"The executive board invited attending patients to an informal meeting where we "brain-stormed" ideas on ways to include and communicate to the patient community new research and treatments to all those affected with the CCSVI phenomenon including normal healthy controls and those with neurological disease. Dr Mark Haacke spoke briefly about international imaging research (of which he is a principal investigator) shows CCSVI in Parkinson's. He will be sharing the study in his presentations.
Questions?To you the stakeholders in your disease process, would you welcome more direct information from the ISNVD (i.e webinars, interviews, editorials). Would you become a member ( if dues are financially within your budget) in order to take advantage of new information and debate with the ISNVD professional community.
Let's start a dialogue ... let the Alliance know your thoughts, suggestions, pros and cons. Comment below -- we will be discussing in the next two days. Please, please --- this is not the forum to ask anything related to your specific health issues.
Thanks,
Sharon Richardson"
President CCSVI Alliance