Taylor Kane’s passion for rare disease advocacy began in grade school, shortly after her father died from the rare X-linked condition adrenoleukodystrophy (ALD) and she learned that she was a genetic carrier of the disease. Not only did Taylor help raise substantial money for ALD research, she successfully lobbied the New Jersey legislature and governor to enact a law requiring the screening of newborns for ALD in New Jersey. Over the years, Taylor has become deeply involved in the rare disease community, speaking at numerous rare disease-related events and contributing to a variety of campaigns as a thought leader and voice for the rare disease community. Taylor is the founder and consulting executive director of Remember The Girls, an international nonprofit organization which aims to break the stigma facing females with X-linked disorders. She also champions the needs of the rare disease community and works to foster communication and trust-building initiatives between biotechnology, pharmaceutical and genomic companies and their patient populations as a consultant (Taylor Kane Consulting, LLC). Taylor is a summa cum laude graduate of The George Washington University who primarily resides in New Jersey, but spends a great deal of time in the United Kingdom and the Czech Republic. She 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.
Taylor Kane was a daddy's girl from the moment she was born, smiling and cooing whenever her father was around and refusing to sleep until he held her in his arms. But shortly after she turned three years old, the unthinkable happened. Her father was diagnosed with a rare, genetic disease for which there was no cure. It wasn't long before he began to experience a number of bizarre and frightening symptoms, and young Taylor watched helplessly as the disease ravaged his body and mind, transforming him into a shell of the father she once knew: a man unable to walk, talk, swallow or understand what was going on around him. A man who no longer recognized her.
Fast forward five years. Her beloved father now gone, nine-year-old Taylor is dealt another devastating blow when she learns that she is a genetic carrier of the disease that took her father's life. Not only will her future children have a fifty percent chance of inheriting the disease, she, too, faces the risk of developing symptoms of her own in the future.
In Rare Like Us, Taylor, now a twenty-one-year-old college student, shares the invaluable lessons she learned growing up in a family plagued by a genetic disease so rare that most doctors have never seen it, much less heard of it. She recounts with raw honesty how she managed to conquer her childhood demons and come to terms with her grief and loss; how she transformed her pain into passion and purpose; and how she continues to strive to honor her father's legacy by living her life in a way that would make him proud.
This compelling memoir of a young woman's resilience and determination will captivate and inspire not only those who have experienced the isolation and despair that comes with having a rare disease, but anyone who has struggled to find the silver lining in heartbreak or tragedy, or who is searching for hope in the face of an uncertain future.