Imagine losing your father at a young age to an incurable genetic disorder and then finding out you carry the same genetic condition. For Taylor, this was a reality.
Taylor’s father passed away from Adrenoleukodystrophy, or ALD, a hereditary neurologic disease caused by an abnormal gene on the X chromosome. Males born with ALD will always develop the disease, while women can carry the abnormal gene without knowing it. By age 10, Taylor had learned of the full implications of being a carrier, including the 50% chance of passing the disease on to her future children, and the possibility of developing symptoms herself.
Taylor didn’t resign to her fate, and instead, became passionate about helping others impacted by ALD. Taylor founded Remember The Girls, a nonprofit organization that provides support and advocacy to women who are carriers of ALD and other rare conditions, and organized fundraising events on behalf of Kennedy Krieger, raising $15,000 for our Moser Center for Leukodystrophies.
This Leukodystrophy Awareness Month, we recognize Taylor for her advocacy and dedication to helping others impacted by leukodystrophies.