What can an Ambassador do for you?
Ambassadors are people who have lived experience with leukodystrophies and are spaced out geographically to be able to offer more relevant information to families as they reach out. When you reach out, your request will be answered by an Ambassador most appropriate to handle your need. For example, a family seeking genetic counseling resources in New York State would be referred to our New York State Ambassadors. However, a person reaching out seeking information on how to connect to a type-specific leukodystrophy group will be referred to an Ambassador familiar with that type of leukodystrophy regardless of their geographic location.Our Ambassadors are guides to resources and answers to your questions. Examples of things you may reach out to our Ambassadors for (but not limited to!): locating a physician or leukodystrophy centerproviding basic leukodystrophy educational materials to share with medical professionals or care team members who are uninformed in leukodystrophies in general or specific typesassistance getting in touch with local resource agenciesPlease know that our Ambassadors are unable to offer medical or legal advice, but can direct you to appropriate resources that can. If you are in need of emergent mental health support or crisis support, here are some resources. (Hyperlink)