Support & Resources
Please join our support groups to connect with families and medical experts.
How can Cure MLD help?
We provide free copies of Living with Leukodystrophy (a medical resource guide), Loie's Disease (a children's book explaining leukodystrophy for educators, parents, and children), and Fixing Genes, Treating Disease (a children's book explaining gene therapy) to MLD families.
We are here to help!
What is the Cure MLD/Ambassador Program?
Because the first weeks and months after the news of an MLD diagnosis are particularly challenging, we have created the Ambassador Program to support families.
You do not need to travel, the Ambassador Outreach Coordinator will contact you, listen to your concerns, answer questions, and help you and your family on this journey.
The Ambassador Program offers a variety of services:
Medical resources and information about clinical trials
Specialists' guidance on how to manage home-based care
Online support groups
Emotional support for caregivers, siblings, and patients
Grant programs to assist with accessing care for your MLD loved one
(For US families) Information about Medicaid, SSI, Make A Wish, and IEPs