Who We are
We are a network of parent/patient advocates and nonprofits dedicated to helping families impacted by metachromatic leukodystrophy.
​
Our partners include Archangel MLD Trust (UK), Fundacion Lautaro te Necesita (Argentina), the United Leukodystrophy Foundation, GLIA, Leukodystrophy Resource and Research Organization (Australia), Bethany's Hope (Canada), and MLD families around the globe.
​​
Additional funding was provided by an unrestricted grant from Orchard Therapeutics.
Additional support was made possible by Love for Loie and the Carr-Kefalas family and donors like you.
Are you a newly diagnosed family?
You are not alone, please contact us and we will have a family ambassador contact you.
We will also send you and your loved one a special care package that includes Loie’s Disease, a children’s book to explain leukodystrophy to children, and the “Living with Leukodystrophy” medical resource guide.
.jpg)