Who We are

We are a network of parent/patient advocates and nonprofits dedicated to helping families impacted by metachromatic leukodystrophy.

Our partners include Chloe’s FightLove for Loie and The Hammond FamilyThe Sullivan Family and FriendsGavin Flying for a Cure, The Calliope Joy Foundation/Cal’s CupcakesFundacion Lautaro te Necesita (Argentina)Leukodystrophy Resource and Research Organization (Australia)Bethany's Hope (Canada), and MLD families around the globe.

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Additional funding was provided by an unrestricted grant from Orchard Therapeutics.

 

Additional support was made possible by Chloe’s Fight, The Sullivan Family and FriendsGavin Flying for a Cure and The Calliope Joy Foundation.

Meet the team

Maria Kefalas

Director of Outreach and Corporate Relations

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Amy Price

Parent Advisor

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Mary Omecene

Advocate for adult-onset MLD patients

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Derek Gavin

Parent Advocate, Rare Disease Advocate Professional

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Shanna Quimby

Director of MLD Newborn

Screening Task Force

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Erica Barnes

Director of Government Affairs and Policy

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Susan Sullivan

Coordinator of Cure MLD website/ Family Advisory Board

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Pam Bennett

Outreach, Adult MLD Patients

Would you like to JOIN the Cure MLD team?

Cure MLD GLIA meeting 2019
Cure MLD GLIA meeting 2019

Cure MLD GLIA meeting 2019
Cure MLD GLIA meeting 2019

Cure MLD GLIA meeting 2019
Cure MLD GLIA meeting 2019

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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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