Taylor

Taylor Kane, founder and CEO of Remember the Girls, recently shared her remarkable story with Ultragenyx and the rare community. Taylor and Remember the Girls works to raise awareness and advocate for woman carriers of x-linked recessive disorders, including research studying the effects of these disorders in women, while continuing to search for treatments for males.

“For as long as I can remember, what motivated me to become an advocate was knowing that through advocacy and through helping others, I would be honoring my dad. It also helped me cope with my loss.”

Taylor is a carrier of Adrenoleukodystrophy (ALD), an x-linked recessive disorder. Her father was diagnosed with ALD and passed away from the disorder when she was just five years old.

“I am worried about developing symptoms of ALD when I get older, but the fact that I am involved in the fight for a better future for carriers helps to put me at ease and gives my life purpose. It’s really important to spread awareness and hopefully mobilize the medical community to pay more attention to carriers, do more research, and include us in clinical trials.”

Taylor started her advocacy journey in fourth grade helping build awareness among peers and classmates and fundraising through runs and walks. In high school, she focused her efforts on lobbying legislators to introduce and pass a bill requiring newborn screening for ALD in her home state of New Jersey. That bill was passed in 2013. Since then, she has created her own non-profit organization, Remember the Girls, whose mission is, “to raise awareness of the many issues facing female carriers of X-linked genetic disorders; to provide a forum for X-linked females to share their stories, ask questions, provide and receive emotional support, and develop friendships; and to advocate for increased attention of the medical community to the physical and emotional issues of females who carry X-linked disorders.”

X-linked genetic disorders are caused by a mutation on the X chromosome. Because males have only one X chromosome, they will be affected; however, females have two X chromosomes, which means they have an additional, normal copy of the gene. The prevailing thought is that this makes a “carrier,” or someone who may pass the condition on to children but isn’t affected themselves. Taylor founded Remember the Girls after learning that more than 50% of female ALD carriers go on to develop physical symptoms – and this may be the case in other x-linked recessive disorders as well.

Learn more about Taylor by watching this short video and reading her article, in Patient Worthy – “Growing Up as a Rare Disease Advocate.”