top of page

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.

50929472_10156606486120266_2872655942120

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

IMG_0721-Edit-Edit.jpg
CureMLD-Logo-Circle.png

Amy Price

Parent Advisor

Amy-Price.png
CureMLD-Logo-Circle.png

Mary Omecene

Advocate for adult-onset MLD patients

Mary Omecene.jpg
CureMLD-Logo-Circle.png

Derek Gavin

Parent Advocate, Rare Disease Advocate Professional

Derek-240x300.jpg
CureMLD-Logo-Circle.png
Shanna-Quimby.png
CureMLD-Logo-Circle.png

Shanna Quimby

Director of MLD Newborn

Screening Task Force

Erica-Barnes.png
CureMLD-Logo-Circle.png

Erica Barnes

Director of Government Affairs and Policy

Susan-Sullivan.png
CureMLD-Logo-Circle.png

Susan Sullivan

Coordinator of Cure MLD website/ Family Advisory Board

read more
Pam Bennett.jpg
CureMLD-Logo-Circle.png

Pam Bennett

Outreach, Adult MLD Patients

Would you like to JOIN the Cure MLD team?

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.

sample 1C(1).jpg
bottom of page