CONSULTANT ✰ ADVOCATE ✰ SPEAKER ✰ AUTHOR
Taylor Kane has spent most of her life as a rare disease advocate. She currently serves as Community Engagement Manager at AllStripes, a healthcare technology company dedicated to uncovering new treatments for people with rare diseases. In addition, 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. 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. At the age of fourteen, Taylor founded a campaign called YAC (Young ALD Carriers) to support young females who carry the gene for ALD and to assist them in effectuating positive change through advocacy, social media, and the legislative process. Since college, she has served as a leader of the Young Adult Representatives of the Rare Disease Legislative Advocates (YARR), educating young adults with rare diseases to advocate for more affordable, safe, and effective treatments. Taylor is a summa cum laude graduate of The George Washington University who resides in New Jersey, but spends several months each year in the United Kingdom. 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.
20 Rare Disease Champions to Know - Global Shakers (February 2020)
Undergraduate Prize For Feminist Scholarship - The George Washington University Women's, Gender, and Sexuality Studies Program (May 2019)
Rare Voice Award (Teen Advocacy/State) - Rare Disease Legislative Advocates (November 2017)
RARE Champion of Hope (Teen Advocacy) - Global Genes (September 2017)
Volunteer of the Year - Kennedy Krieger Institute (May 2017)
Hero of the Year - National Association of Women Business Owners-South Jersey Division (February 2017)
Community Contribution Award - Educational Research Center of America (October 2016)
Young Women in Public Affairs Award - Zonta International/Trenton NJ Division (April 2015)
New Jersey State Governor’s Jefferson Award for Public Service,Youth In Service - Jefferson Awards (June 2014)