Are you newly diagnosed?


Anne Brendel
Reno, Nevada

Anne’s daughter was misdiagnosed by a general neurologist at a U.S. Top 10 Ranked Neurology Hospital with Leukodystrophy at 18 months old and told her daughter had 6 months to 3 years to live. 

During her family’s diagnostic journey, Anne became intimately familiar with this tragic disease, including its causes, symptoms, treatment and prevention options. She is passionate about providing resources to families during their diagnostic journeys and supporting them in the process. In addition, Anne’s goal is to provide resources to families regarding prenatal genetic carrier screenings and to advocate for State newborn screenings to help prevent the transmission of known Leukodystrophy genes in the prenatal phase. She joined the Board of Directors in December 2020. 

Anne is a healthcare regulatory attorney. Her hobbies include hiking, skiing, and yoga.

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