The MLD Extended Family & Friends Discussion List™ in a private email-based online discussion list targeted at extended family members and friends of families affected by MLD. This list is for those who want to share and learn from each other how to best engage with the primary caregivers and families affected by MLD. It's also a place for extended family to ask genetic questions to better understand how this might affect your immediate family.
If you simply want to learn more about MLD so that you can help your family member or friend then this might be the place for you. This is a separate list from the primary caregiver's - they have their own private discussion.
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, trying to help our relative/friend with their real MLD 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 Extended Family discussion list.