http://www.savingdylan.com/ The Ireland Foundation founded by a family in Ireland, who’s son Dylan was diagnosed with MSD. They have started the research in pursuit of treatments and families can reach out to Alan Finglas with any questions.
http://mldfoundation.org/ While MLD is a different condition, many of the symptoms are similar. This MLD foundation is established and the founders and board have been tremendous partners to MSD patients through the years. They have an annual family conference that is well done and may be helpful for families.