Primary caregivers - usually the parents or spouses of a MLD affected person - are invited to join several hundred other families on the the online MLD Family Discussion List™. The MLD Family Discussion List is the oldest and largest MLD discussion list in the world. You will find hundreds of parents, spouses, and a few otherstaff here -- all bound together by the common experience of MLD.
The list is private and secure so all topics, no matter how personal or private can be openly discussed.
The list host reviews all requests to join our list to assure that we maintain a healthy community. You will be asked to briefly introduce yourself and your involvement with MLD when you write.
E-mail lists allow people to communicate on their own time lines, or to simply "hang back" and observe. This is different than an on-line chat as the readers may not receive your message for hours and will respond when they have a moment (or are awake - we have members from literally across the globe!). This way we all can communicate on our own schedules. Unlike discussion boards, these messages have a sense of timeliness to them as they pop into your in-box. This helps to build the family atmosphere of this community.
All questions and topics are "fair game" for this list. If you want to know if someone has experienced something, or you simply need to unload - feel free. We are not restricted to simply talking about medical and care issues. We all are real people, with real struggles ... when you are having a tough time it's good to be able to reach out to someone you know has been there! Please review the list etiquette for guidelines on sharing and responding to list messages.
Please remember that we are not medical experts, and even those experts that occasionally do post to the list are acting only as helpful individuals -- diagnosis and treatment is a very personal thing that cannot be done properly via e-mail - be sure to confirm and consult with your local medical professional before taking action on any items discussed on the MLD Family discussion list.