advocate. speaker. author.
Taylor Kane is the founder and president of the non-profit organization, Remember the Girls, an international support and advocacy group which unites, educates and empowers female carriers of rare genetic disorders--a group which is underrepresented and often overlooked by the medical profession. Taylor learned that she was a carrier of the rare genetic disease Adrenoleukodystrophy (ALD) after her father died from the disease when she was five years old and has been a fierce advocate ever since, having helped raise more than $250,000 for ALD research... In 2013, she successfully lobbied the New Jersey legislature and Governor to enact a law requiring the screening of newborns for ALD, as the disease can only be cured if treated before symptoms develop... Shortly thereafter, she 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. The campaign has attracted young ALD carriers from around the world, and currently has members from as far away as South Africa and Estonia... In addition, she currently serves as a leader of the Young Adult Representatives of the EveryLife Foundation for Rare Diseases, educating young adults with rare diseases to advocate for more affordable, safe, and effective treatments... Taylor is an accomplished speaker, an author, and an award-winning activist. She is presently a junior at The George Washington University, where she is pursuing a degree in Political Communication and a minor in Women’s Studies. In her free time she enjoys reading, watching documentaries, and cuddling with her dog.