About Cure MLD
Who is Cure MLD?
Cure MLD was launched by Maria Kefalas as a spin-off of her advocacy to support MLD families. Support comes from the Calliope Joy Foundation, Chloe's Fight, Love for Loie, Gavin Flying for a Cure, and MLD families worldwide.
Maria Kefalas
Founder
Maria is an author and advocate for children impacted by leukodystrophy, newborn screening and gene therapy.
Catherine “Kat” Renick
Parent Support Groups
Kat hosts our parent support groups. She is a trained child life specialist in private practice with Breakthrough Coaching.
Asmahan Safi
Community Coordinator
Asmahan coordinates the MLD Community Meeting at the United Leukodystrophy Foundation Meeting each year.
Maria Kefalas
Founder. Author and advocate
Maria Kefalas launched Cure MLD as a spin off for her advocacy to support MLD families. Maria is an author and advocate for children impacted by leukodystrophy, newborn screening and gene therapy. The Carr-Kefalas family’s bake sales launched the Calliope Joy Foundation in 2013, this philanthropy led to the creation of the world-renowned Leukodystrophy Center of Excellence at the Children’s Hospital of Philadelphia .
Maria’s work has been featured on CBS Sunday Morning with Jane Pauley and recognized by the the National Organization of Rare Disorders (NORD), the World Symposium of Lysosomal Storage Disorders and the United Leukodystrophy Foundation.
Maria’s book Harnessing Grief describes her journey from heartbreak to hope after Cal’s diagnosis with leukodystrophy. All proceeds from the book’s sales support children impacted by leukodystrophy.
Help us support MLD families
Every gift to the Calliope Joy Foundation supports Cure MLD's work connecting families with information, specialists, and each other. The Carr-Kefalas family's bake sales launched this philanthropy in 2013 — and it helped create the world-renowned Leukodystrophy Center of Excellence at CHOP.