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Archives for: August 16th, 2021

Cure MLD, The Calliope Joy Foundation and NORD Launch A Research and Engagement Study of Metachromatic Leukodystrophy (MLD)

Written by Rohan Narayanan on August 16, 2021

Research study is open to participants worldwide to advance understanding and treatments for Metachromatic Leukodystrophy, a recessive genetic disorder that is characterized by the accumulation of fats (lipids) called sulfatides causing damage to the nervous system

Washington, DC, August 16, 2021—Cure MLD, an initiative of The Calliope Joy Foundation, and the… Read More

Deborah Skolaski: 2019 Rare Impact Award Honoree

Written by Lisa Sencen on May 20, 2019

Houston native Deborah Skolaski is the loving grandmother of Cori, a seven year-old living with metachromatic leukodystrophy. MLD is a genetic disorder that affects the nerves, muscles and other organs, as well as behavior. Deborah felt helpless as she observed the struggles that her son, daughter-in-law and Cori… Read More