Who We are
We are a network of parent/patient advocates and nonprofits dedicated to helping families impacted by metachromatic leukodystrophy.
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Our partners include Chloe’s Fight, Love for Loie and The Hammond Family, The Sullivan Family and Friends, Gavin Flying for a Cure, The Calliope Joy Foundation/Cal’s Cupcakes, Fundacion Lautaro te Necesita (Argentina), 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 Chloe’s Fight, The Sullivan Family and Friends, Gavin Flying for a Cure and The Calliope Joy Foundation.
Meet the team
2019 global leukodystrophy initiative attendees and signage.
2019 global leukodystrophy initiative attendees and signage.
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.
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