May. 20, 2019
Posted by Christina Jensen
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 were experiencing. However, she was determined to make a difference by taking a difficult situation and having something positive come from it. It was then that Deborah decided she wanted to help not only people impacted by MLD but to work on behalf of all rare disease patients by becoming an advocate with NORD’s Texas Rare Action Network.
Appointed as volunteer State Ambassador for Texas in February 2017, Deborah began her efforts with that year’s Rare Disease Day event. Since then, she has helped spearhead the growth of rare disease advocacy in Texas and driven positive policy change by lobbying and testifying at the state capitol on newborn screening and Medicaid managed care. She also led NORD’s local support of step therapy legislation, which was passed into law in 2018. As a result of her efforts, the Texas Rare Action Network has grown to more than 800 individual advocates, many of whom she connects to legislators and resources they would not otherwise have known about.
Deborah combined her passions for running and raising rare disease awareness by joining NORD’s charity marathon team, Running for Rare. She has run over 40 miles on behalf of Running for Rare so far and looks forward to logging many more. Committed to her local rare disease community, she was instrumental in the development of an emergency relief resource packet that NORD distributed after the devastation of Hurricane Harvey in 2017.
Reflecting on her work with the Rare Action Network to date, she says, “I have been profoundly and forever transformed into a more caring and grateful person by each of the rare disease patients that I have met because I am so inspired by the way they can manage to smile in the face of the adversity. It’s humbling and motivates me to help.”
NORD is honored to present Deborah Skolaski with a 2019 Rare Impact Award.
Join us during NORD’s annual Rare Impact Awards ceremony, presented as part
of the 2019 Living Rare, Living Stronger Patient & Family Forum in Houston, TX.