Heres the captionWe are excited to announce a new series to the Remember the Girls Podcast! Welcome to Taboo Talks, a series focused on many bioethical issues that carriers and female patients of X-Linked Disorders face in their lives.
TAYLOR KANE
Taylor Kane has spent most of her life as a rare disease advocate. She is the founder and executive director of Remember The Girls, an international non-profit organization that unites, educates and empowers female carriers of X-linked genetic disorders. Taylor’s activism began when she was in grade school, shortly after her father died from the rare x-linked disorder Adrenoleukodystrophy (ALD) and she learned that she was a carrier of this devastating disease. Taylor is an award-winning activist, an accomplished speaker, and a respected author, having recently published a memoir, Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued by Genetic Disease. @rarelikeher
EMMA BLISS
Emma Bliss found out she was a genetic carrier for a rare neuromuscular x-linked disorder, Myotubular Myopathy, the unfortunate way that many other women find out about their X-linked carrier status - by giving birth to a son with the affected disorder. From the loss of her son, the family planning journey she has endured since and from the knowledge she now has, Emma has found a new purpose. X-Linked disorders are more common than most know and can affect an entire family tree. Genetics can be a confusing path to navigate and one we don’t have all the answers too, but advocacy and awareness are important. She believes that for all the babies born, male and female, for all those affected with these diseases and absolutely for the women carriers, we must stand strong together. Emma is currently pursuing advanced degrees in the field of genetic counseling and has found a passion in advocating and supporting other women going through similar journeys. @emma_blissfull
